20 December 2005


The return visits we’ve been to since Abbe’s surgery in July, have all gone really well. His saturation levels have been up on 85% and his heart, the shunt and his vessels all looked fine on the scan (the

All as it was planned, that is.

13 December 2005


December 13 is Lucia Day in Sweden. A tradition with white gowns, lit candles and children singing.

Abbe’s mother was out of town and we had a Lucia-do to go to at big brother’s kindergarten. There were a few things too many to keep in mind. Sitting on the floor with mulled wine, saffron lucia-buns, gingersnaps … A pointy star-boy’s hat that wouldn’t stay put on big brother’s head and an Abbe-lad who kept falling around the place whenever I tried to put down. On top of which I was meant to be taking photographs.

Necessity is the mother of invention.

15 November 2005

One, two, three – shoot.

When margins are small one does not want the RS-virus or the flu. We’re well aware of it – been there, done that. So all heart-children are vaccinated against the RS and the flu.

The RS vaccine doesn’t fit into one syringe. It’s too big a volume, basically, to give in the one muscle at the one time. Giving two shots in a row wouldn’t be too clever either, the second one will not be welcomed by the little reciever. So they’ve a special trick to get it done.

Two nurses came in and prepared the vaccine in the two sepapate syringes. Wonder why, thought I. Then, all over sudden, “ Allright … one, two, three” and before we knew it they’d put one needle into each leg and the whole thing was over. Just like that.

It caught me by surprise. But it’s clever. One pain. One cry. Done.

It’s to be repeated thrice this winter, though.

30 October 2005


Ever tried to insure a child with a congenital heartdisorder and a chromosome aberration? I have.

It’s common knowledge that one cannot get a life insurance after receiving a death sentence of some sort. That’s understandable. It just wouldn’t work. I mean, it’s a nice enough thought, making sure your loved ones are taken care of after your’e gone, but not for the insurance companies, there’s no business in that. That’s why we were somewhat relieved to have signed up for a Pregnancy-insurance and a Mother and Baby-insurance with Trygg Hansa, before Abbe was born. He was healthy, as far as anyone knew, when we signed up for it. Nice to know we’d be covered.

Or so we believed.

When we claimed the health-insuance part we were told that it’s not valid if the child has “congenital disorders or malfunctions…blah, blah…chromosome aberrations…blah, blah…i.e. Down’s syndrome and congenital heart disorders.” In plain English; all the times when you would really need the insurance.

In other words, completely useless, but a great way of getting customers straight after birth. After a couple of months you receive a letter with an offer of prolonging the insurance and letting it become an ordinary health and accident insurance for your child. And why not for the mother, while you’re at it?

I’ve done some research. An ordinary  health-insurance seems to be out of the question. Anything connected to the heart condition or 22q11 is excepted from tha insurance. It doesn’t take much to figure that that about covers everything we might need help with. What we can get is an accident-insurance. Abbe might fall of his bike or hurt himself in some other way so that might come in handy. There’s one exception, though. An insurance company with a different approach towards people with congenital disorders. ACE insurances, it’s called, and it’s not that big in Sweden yet.


22 October 2005

The dietist.

We’ve been seeing a dietist. It’s a constant struggle, trying to get Abbe to eat, and they’re helping us us find out the reasons for him not wanting to.

Feeding times are still 07, 10, 13, 16, 19, 23 and 03 and we still give him the milk-free substitute. We still take carefull notes on how many milliliters he actually eats, we dare not do anything else. We’ve also tried giving him puree. It's not going too well.

Why is this such a problem? Is it a technical thing? Does he have anatomical impediments? Mouth-motorics, cleft palate, all that stuff? It’s a huge stress factor, this constant struggle against the weight and length diagrams.

We told the dietist about our DIY-cardex, our lists of Abbe’s milliliters. She smiled and asked:
–How much does he eat in a day?
–Eh…700ml, we answered.
–And does it vary a lot, from day to day?
–Why don’t you stop taking notes, then, and relax a little? You know pretty well, don’t you? That he’s getting enough?

Sometimes you feel like a complete idiot.

25 September 2005

Parenting classes.

The Centre of Children’s Cardiology in Gothenburg has launched a heart children parenting class project. For two nights, parents of heart kids receive information on all sorts of things related to our children, their conditions and our our situations in general.

A psychologist talked about how relationships are tried on the arrival of a sick child. On the difficulties of having a sick sibling and lots of other interesting things that can be considered and applied in our everyday life.

The dietist talked about how to get heart-children to eat (I wouldn’t mind a follow-up class on that subject) and gave tips on how to maximise the energyvalues of what little they do eat, in order to maintain a good balance. Lots of good tips. Especially if the child is not allergic to cows milk.

The therapist told us about different allowances we can apply for, about LSS (the Act on Support and Service for Persons with Certain Disabilities) and about insurances.

A dental specialist told us to take extra care in looking after our heart-childrens’ teeth. Due to small, frequent, all-hours meals and a poor enamel status due to lack of oxygen, they have a much higher risk of tooth decay and caries.

It was also a great opportunity to meet other parents in the same or a similar situation as ourselves. I hope they’ll keep this up. And develop it. Maybe they already have? Have you heard of classes like these?

2 September 2005

Passing it on?

Approximately 90% of people diagnosed with the 22q11 syndrome have a nymutation, which means that the error in the genetic material appears for the first time with that person and has not been inherited. That’s how it worked with Abbe. My wife and I were tested as soon as it was clear that Abbe had 22q11. Neither of us were carriers.

But if one parent has 22q11 there’s a 50% risk of inheritance for children. So there’s a fifty-fifty risk that Abbe’s children will get the syndrome.

Is that burden too going to rest on his shoulders when he grows up and wants to start a family? I’ve done a good bit of thinking on this matter and felt rather sad the other day when I talked to my big sister (the pediatrician). She said: “Ah, give over, you can’t be worrying about stuff like that? What if he’s gay? There’ll be no problem then, will there?”

How true.

28 August 2005


Abbe was christened today. A lovely little family ceremony. Big brother thought it all right that Abbe wore a dress, but commented on it being a bit on the large side.

The priest was Icelandic and she happened to be aquainted with Solveig, Abbe’s 22q11 specialist. It’s a small world. Or Iceland is small. In Gothenburg.

20 August 2005

To tell or not to tell.

We talked a bit, my wife and I, on the matter of what to tell people and what not concearning Abbe’s chromosome aberration. I mean, we’re all prejudice. If I say chromosome aberration people hear mongoloid, retarded and so forth. We simply don’t know enough. And to be honest, I didn’t know of many chromosome aberrations but Down’s syndrome, before Abbe was born.

What we don’t want is to give people a set idea of Abbe as a person, risking thet it be self-fulfilling. Like “you become what you’re being treated as”, if you get my point. If we choose to tell, will pre-scool staff, scools, friends and aquaintances see Abbe for who he is or will they be searching for handicaps?

On the other hand, if we don’t tell, they’ll notice anyway. Without a diagnosis, a name for it and an explanation, they might just find him odd. When you know you know. Imagine the amount of explaining one would have to do otherwise.

And yes, you’ve probably guessed what conclusion we came to. So now everybody knows. Including you.

15 August 2005

Food – a battle.

We don’t give Abbe breast-milk anymore. My wife stayed at it for a very long time, but there has to be some sort of a limit. We’ve left the pump back and our basement is full of jars labeled Profylac. It’s a milk free substitute. Or, rather, it’s based on cows milk but the proteins in it have been tamperred with so that sensitive little tummies can deal with them. The consequence being that it tastes nothing like milk. It’s rather disgusting, as it were, undrinkable in my oppinion. Bitter as methylated. But milk free.

No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.

Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.

Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.

It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.

9 August 2005

Childcare allowance.

I know. It’s not the first thing that springs to mind when you find out that your child is ill. But after a while, when the chock has settled and life starts trodding along, you realise. It’s not for free.

Medicins, special food, travelexpenses and parkingfees for all the trips to hospital and doctors, lost incomes and so on. And what’ll it be like in future? How much special care will he need? Will he be going to an ordinairy school? What’s all that going to cost? Will we be able to work full time?

At hospital they advised us to apply for childcare allowance. I had never heard of it til then. But still. It’s dealt out by the the Swedish Social Insurance Agency and anyone who’s ever tried to fill in one of their forms for parental benefit will understand how ominous this sounds.

After a few hours of thinking, twisting words and turning them, we’ve finally filled in all the pages of the application form, got the doctor’s testimony to go along with it, stamped it and posted it. I’ve been told that they’ll now call us to some sort of an interview, where we’ll have to tell the whole story once more. Effectiveness the Swedish Social Insurance Agency style.

5 August 2005

Nuchal scan.

I found an interesting paper today, that I had completely forgotten
about. Before Abbe was born, my wife went to Linköping to do a so called
Nuchal scan. It’s an extended ultra sound scan where they take a closer
look at the thickness of soft tissues of the nape of neck of the fetus. They also
take a closer look at the heart. All to find out if there might be any
chromosome aberrations, Down’s syndrome, or the likes of it.

Our journal reads; “The risk of carrying a foetus with Down’s syndrome
was before the scan 1/190 (age risk) and after the scan 1/1573 (age +
NUPP 1.5mm)”

1 out of 1573. That’s a pretty small risk. But of course it doesn’t
mention the 22q11 syndrome.

On the other hand. Had the risk of having a child with Down’s syndrome
been 100%, he or she would have been just as welcome. And had I known
then that Abbe was to have the problems that he has, I still wouldn’t
have given it a second thought. No way.

21 July 2005

How are you, Abbe?

Great. Let's go home then!

18 July 2005

Mag3 scintigraphy.

Today, Abbe went through another examination of his kidneys. Or maybe that should be his kidney. They inserted a radioactive substance in his blood which went through his kidneys. He was given a sedative, to make him lie still in a gamma camera, which registered the radiation. The camera shot a frame a second or so, during around 20 minutes and the end result was a little blurred film which reminded me of the ones you see taken by thermal imaging cameras.

The aim of the examination is to show how kidneys take up the drug, and that it runs off as it should. And you could see quite clearly from Abbe’s little film that there was only one kidney, on one side. Apart from that, all was fine, as far as I understood. I guess we’ll see once the doctors give us their verdict.

I must admit it felt a bit weird when they brought along a syringe with one of those radioactive symbols which reminded me of my old Kraftwerk records, and injected it into Abbe’s bloodstream. But apparently, the dose was weaker than what you normally get during an ordinary X-ray or CT scan.

17 July 2005

Hospitals are fun.

Abbe’s big brother gladly visits the hospital. It’s particularly fun to care for all the sick dolls and teddies in the Children’s corner. There are stethoscopes, ECGs, oxygen face masks, probes, syringes, dressings and lots of other things the dolls need to feel good.

16 July 2005

Cow’s milk, no thanks.

I just remembered I forgot to mention one thing: Abbe is allergic to milk. We actually started to suspect this the first time he was admitted to hospital and now we know.

It all started with the lack of breast milk, at one occasion. Abbe’s mum was at home and had of course pumped out milk there, (using the pump we had borrowed from the maternity unit and kept at home), but our little stock in the hospital fridge was empty. So we mixed some infant formula milk, based on ordinary milk – and gave it to Abbe. After a while, he was vomiting like a calf.

Now, it’s not entirely unusual that babies vomit but our Abbe didn’t usually do that. And now, he was not that well. Since it’s not that easy to get enough nourishment into him the normal way, this was not particularly fun.

We tried a few times again later, with the same result. That’s when it was decided that in the future, he was to get a milk-free substitute when the breast milk wasn’t enough.


Today, Abbe is four months old and was given a little teddy by the staff. They know Abbe almost as well as I do. I did a bit of counting, and came to the conclusion he had spent more than half his life at Queen Silvia’s Children’s Hospital. Well, I think it's time to grow out of these statistics now.

15 July 2005

Coffee and sticky chocolate cake

Abbe has come back from Intensive Care and it’s very quiet on the ward. I think there are two families here, part from ourselves. Ida from Sundsvall and Adam from Värmland (think it’s Karlstad). As we are in the midst of the holiday season, only emergency ops are allowed now. All planned operations will have to wait until after July, when Sweden has woken up again.

Actually, it’s quite nice. You get to talk more to the other parents and the staff. Not that I feel particularly stressed here, normally. Absolutely not. But still, there is a big difference. The staff are fighting about who gets to ‘borrow’ Abbe. "Maybe you want to go for a walk? I can look after him while you’re away".

Today, one of the nurses was making a cake in the parents’ kitchen. A lovely smell spread across the ward. Then she came along with a trolley, filled with coffee and newly made sticky chocolate cake and whipped cream. We all squeezed together in the play corner sofas and had a really good time, Ida’s and Adam’s parents, the staff and myself.

12 July 2005

Images from the intensive care unit.

They anesthesized Abbe with a mask, placed a peripheral venous catheter in his thumb...

...and the saturation meter in his cheek.

All values ​​are noted carefully on an observation sheet.

11 July 2005

The incident with the heart-lung machine.

The operation went well. Not only did they widen the narrow pulmonary vessel, they also took the opportunity to swap the shunt for a larger dimension. In this way, they bought Abbe some more time, until his next operation. And that’s brilliant. It means he will have the time to grow, become stronger and that he will get some peace and quiet for a while. It’s hard to say how long it will take but – about a year is rather a realistic guess, as far as I understand.

But the surgeon also told us something which was not as fun. During the operation, you use a heart-lung machine. It oxygenates the blood and pumps it around the body. In other words, it functions as the patient’s own heart and lungs, but outside the body, thus enabling you to turn the heart off while operating on it.

Just as they were ready to turn the heart lung machine off and transfer the blood in it back into Abbes body, something unexpected happened. In some way or another, a little bit of air entered the system and with that, out in Abbe’s veins. This is not good. The surgeon did say he was pretty convinced it was such a small amount that it wouldn’t affect Abbe, but he couldn’t guarantee it. And he seemed a bit upset with the actual incident. "I have operated on children’s hearts for 20 years and never seen this happen before. Now we need to review our procedures, so it can’t happen again".

I tried to focus as much as I could on the positive. That the actual procedure had been successful. My wife didn’t quite manage this, and I pulled her closer to me, to comfort her as best I could.

An eternal wait.

When Abbe had his first operation, we were told not to wait on the ward. After a short walk, we just couldn’t keep away. So, we did exactly what they had told us not to do. The wait became unbearable, of course.

This time, we decided to follow the advice from the medical staff, in pure self-preservation. We just wanted to reduce the pain. Straight after that dreadful moment outside the operating theatre, we went to a café and had a proper breakfast. – Now, what do we do? The minutes dragged past and we just couldn’t take any more breakfast. A walk would not have been enough to dispel the thoughts. So, we went to check out some cars.

I know. It sounds weird and somewhat insensitive. But we needed something to concentrate on, so we didn’t have to think about Abbe, lying there on the operating table. After having visited several different car show rooms and even tested a Skoda, it was soon time for lunch. "They should be finished by now, shouldn’t they", we told each other. And yes, we were in total agreement that this was the case. After having stocked up on food and biscuits at a local super market we returned to the hospital. By the time we had unpacked, made lunch and eaten, it was around 1pm.

– It was good that we spent the whole morning away this time, we told ourselves. – We might even have time for another coffee before they call us to say they are ready. Proud of the fact that we had managed to keep away from the hospital for this long, we sat down and waited to be allowed up, to see our little boy. At 6pm, one of the surgeons came down to the ward. – They are stiching him up upstairs right now, he said. He told us what they had done and how it all went. Just before 7pm, we had a call from the intensive care unit, to tell us we could now come up.

Eleven hours after having left Abbe by the door of the operation theatre, we were now finally allowed to see him. With hindsight, we could have testdriven all the car models in the city, had we wanted to.

Surgery number two.

Just washed before surgery.

At seven o'clock this the morning arrived at the hospital.We washed Abbe with Hibiscrub (antiseptic soap that is used before surgery) and knocked back a couple of cups of coffee. The surgery was scheduled first thing in the morning, and just after eight we left him again at the doors of the operating room.

And at this point, I have to revise some of what I wrote earlier. The part about one becoming hardened. It does not apply here. Not the moment your baby is rolled in to the surgery center. At the risk of repeating myself and being a bit dramatic - it's among the worst things you can experience. I dare to say that if there is a "terrible-experiences-as-parent-list" this easily gets a top ranking. It doesn't matter how prepared you are.

You're not so tough in the elevator down from the sixth floor.

10 July 2005

Soon time again.

The vacation in Denmark is over and the puzzling with babysitters for big brother starts. Since kindergarten is closed for the summer it all becomes a little bit extra complicated. The first days after the surgery we want to be at the hospital both of us, my wife and I. Later on we will have to take turns.

We checked in to ward 323 this morning. After a bunch of controls and the worst attemt to insert a needle on Abbe, we where finaly leaving the hospital for the night and come back for the surgery next morning. As a matter of facts Abbe never got any needle. They gave up after trying at least fifteen different places om his body. In the head, on his hands, arms and feet.

– We will have to anesthetize him with a mask instead tomorrow, they said. Samples before the operation they had to take capillary. In other words a little pricking in his finger and then squeeze out some drops. I am not looking forward to tomorrow.


Our week in Denmark was fantastic. We had decided too relax, enjoy and have a nice time together. All four of us. We knew we had a tough time ahead of us, and that it might be quite a while until we would get another chance.

I promised myself to spoil Abbes brother as much as I could. He was going to get whatever he pointed at. He is really worth it after all he has had to cope with since he got his little brother. It was cheap. Some pails and shovels and an ice cream every now and then. I expect pledges like that to become more expensive in the future.

My wife and I agreed on not thinking about the coming surgery during this week. That, of course wasn't an easy task, but in some magic way we did it quite well. At one point we even managed to time both the boys to sleep in the buggy at the same time, so we could have a beer and a danish smørrebrød at a restaurant in the sun.

30 June 2005

The straw

I received the news of the planned surgery over the phone yesterday at work. My holidays start tomorrow. That was the straw. We’ve longed so for this summer. Getting some well deserved rest and spending some time together after the rough spring that we’ve had.

When I went to tell my colleagues what the doctor had said on the phone I fell apart. Snivelling and sobbing I tried to sum up the conversation. The lump in my throat swelled and my lips were trembling. I couldn’t hold back. The others didn’t quite know how to deal with the situation. Someone asked, “Is there anything we can do?” I could hardly speak but managed to press out. “Be compassionate. That’s all.” And then I locked myself in the bathroom.

To get through the first time in the hospital when Abbe was just born and went through surgery I decided to visualize a goal. I saw my wife, and myself tending to the tomatoes and the basil in the green house. Abbe lying on a blanket under a parasol and big brother running naked through the water sprinkler. “If we can only get to that point, all will be well”, I said to myself looking out on the grey March days.

 It may sound like an image out of one of those shiny and chirpy Jehova’s witness folders. The ones they try to force on you with their foot stuck in your door. But it worked for me, there and then. Something to long for in all the turmoil. And we had almost got there. Then that phone rang.

29 June 2005


The CT-scan of Abbe’s heart brought bad news.

The lung artery splits in two outside of the heart. One leads to the right lung and the other one to the left. It was now clear that the left artery was more or less clogged. That is, the tiny amount of blood that got through the shunt to be oxygenated in the lungs could more or less just get to the right one. No wonder his oxygen saturation levels had been so low.

– We can’t leave it like this, said the doctors. Abbe’s left lung won’t develop right if we do. There needs to be a flow for it to grow properly. I guess it’s a little like cutting off the blood supply of a finger or such. Eventually the tissue dies and you end up with gangrene.

— He has to go into surgery. When was it you were going to Denmark? We booked a cottage in Lønstrup on the west coast of Jylland, and had asked Abbe’s doctors if it would be okay, what with his low saturation and not knowing why, and all.

— Were leaving week 27 and get back on the Saturday of that week.

 – Good. You go on your holiday. When you get back you come here on Sunday the 10th and check in to the ward. We’ll take him in for surgery on Monday, the day after.

The kidney.

The CT showed, as we already knew, that Abbe only has one developed kidney. On the other side there’s some sort of rudimenatry kidney. Luckily us humans are so cleverly constructed that we have spare parts for some of our organs. The kidneys, for instance. You can manage well with just one. The tricky part being that there’s no spare one, in case you might need it.

Anyway, the kidney Abbe does have seems to be in working order, and the kidney specialist (I’ve lost count of all the specialists by now) had no concerns.

27 June 2005


And another session holding still a screaming baby. More needles to be put on. Another ham-hat. Another night at home without food in preparation for the CT. But this time they were all there. So it’s done. Thank God.

24 June 2005

Welcome to Holland.

I’ve learnt something, since Abbe was born, there’s no idea planning anything. You never know what’ll happen next.

Someone had put a note up on the wall in ward 323 that illustrates pretty well what it’s like to become the parent of a child with special needs. It was written in 1987 by Emily Pearl Kingsley (who also did script writing for the Sesame Street-show) and it reads as follows:

Welcome to Holland by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very significant loss.

But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things, about Holland.


21 June 2005

Sick leave.

On arriving at the ward to do the CT this morning we were told that the anaesthetist was on sick leave. -You’ll have to come back in a week, they said.

Hello? Get someone else to do it you twats! After what Abbe went through yesterday it felt like a punch in the face. It really pissed me off.

But having considered it for a while I realised that she’s only human. Like the rest of us. People get sick. Nothing much to do about it. So we removed the needle and prepared to do the whole thing over again in a week. Oh the irony.

20 June 2005

The ham-hat.

At home for the night before the CT-scan. The little hat serves to keep the needle in Abbe’s head in place.

Needles and veins.

We were in hospital today to do some tests and to place a peripheral venous catheter for the check-up tomorrow.

Abbe doesn't have the easiest veins to find which means that every time they try to put a needle into him is hell. Frankly. And not just for him. We were beat after they’d been tormenting him for well over an hour, desperately looking for a good enough vein.

Funny though, how you get used to these things. I’ll never forget when Abbe’s brother was a newborn and at the tender age of three days was to go through the routine blood test. They tried his hands and feet a couple of times before they decided to put the needle in his head. I was holding him and nearly fainted on the chair. My wife, who’s pretty cool about syringes and stuff, cried her eyes out. But now, after all that Abbe’s been through, we just tell the staff to go straight for the head, it usually works.

We’ve grown with the task, I suppose, rather than gone numb. I’m pretty sure we’ve grown. It wouldn’t do, would it? Crying and fainting all the time?

6 June 2005

More check-ups.

We won’t see an 80-85% oxygen saturation in Abbe’s blood. We’re in for check-ups every other week hoping for the saturation level to have gone up. But it doesn’t. Instead it’s gone down further. And for each visit, the experts look more and more confused. We’re now talking a saturation level of about 65%. The cardiologists aren’t happy about that.

They think Abbe might have grown out of his shunt already. It’s not likely; they put in a larger one to be on the safe side. And that was just three months ago. He was meant to keep it for at least a year as far as I understood.

Anyway, they want to do a CT-scan to try and find out why the levels are so low. The kidney-crowd also want to do one to see what’s to be found where the missing kidney should have been. And he has to be anaesthetized on both occasions.

I might be wrong here, but wouldn’t it be easier to check both things on the one occasion? Then Abbe wouldn’t have to be anaesthetized twice? But then again, it’s two separate wards wanting these scans, so it might be a bit far fetched. Believe it or not, they’ve decided to do both in the one go. Good stuff!

Sometimes you have to be silly enough to ask.

30 May 2005

The older the wiser?

Three cardiologists stood around Abbe and the ultrasound machine when we entered room 3, that weird day in March. The day we learnt that Abbe had a heart-condition.

There was this young guy doing the scan and telling the others what he saw. Another was a senior lecturer, and the last one the head of the ward. When the young guy left, the senior lecturer did another scan and kept talking to his colleague. I didn’t get all the terminology but I did gather that the young guy was new and that the other two were impressed by his diagnosis. “Not bad, how he could see this and that.” We later found out that the guy who left had just become a pediatrician and that he was now specialising in cardiology.

During our return visit we found out that the new guy was to be Abbe’s doctor. Of course. So bloody typical. Of all the merited and experienced doctors on the children’s cardiology ward, it had to be the rookie. The beginner. The inexperienced. It’s my child’s life you’re messing with, god damn it.

Today I regret ever having reasoned like that. Abbe’s doctor is great. He’s ever so kind, deeply committed and he handles Abbe brilliantly. He helps out dealing with all the other specialists, even when it’s got nothing to do with Abbe’s heart. Whenever he feels the need to, he consults the other cardiologists. We’re lucky to have him.

I was wrong. I'm sorry.

28 May 2005

One kidney.

One of the not so common symptoms of DiGeorge is some urinary tract problem or other. Since Abbe was in Solveig’s care, we were sent for a scan a couple of days ago, to try and rule out any such problems.

It was a routine scan, just like the ones they’ve done on his heart so many times by now, only slightly lower on his body, of course. The doctor was sliding the ultrasound tool around on Abbes belly for a long, long time, and then said, “Look at the screen and I’ll tell you what we’re looking at.” We looked. And I felt it coming. “This is one of Abbe’s kidneys, and this is where the other one should have been. There’s something there that I can’t say much about with just a scan, we’ll have to look into that, but he only has one kidney, anyway”.

Of course, I thought. why wouldn’t he be lacking a kidney?

18 May 2005


After nine more days in hospital we’re back at home. The pneumonia is gone, so is the RS-virus, and Abbe is, all things considered, well.

My wife finds the nights in hospital hard to cope with. She doesn’t get much sleep, she worries and then there are the check-ups every three hours throughout the night. So we arranged it for her to sleep at home with our two-year-old, but spent the days in hospital while he's in child-care. Which means I spend the nights in hospital. I leave there for work in the morning, and come back at night.

When we were going home, the doctor sorted out a few prescriptions, and also some insurance forms for me. I told him that those forms wouldn’t be needed, since I’d been working all along. He gave me a surprised look and said; “And who are you? Superman?”

In hindsight I’ll admit it wasn’t the cleverest of things to do.

10 May 2005


I’m happy to be back in ward 323. Waiting in the emergency ward, watching Abbe get worse by the minute was no fun. When they wanted to check us in I felt the lump in my throat again, growing. This must be serious. Or they’d have sent us home, right?

But when the visiting room door opened, I saw two red coats from the heart ward and two familiar faces to go with them. “What are you doing back so soon? Thought I’d told you to stay away?” said one of them, smiling. And I felt at home, calm and secure in an instant.

Abbe and I are isolated now, in a room with an airlock leading out into the corridor, because of the contamination risk. Everything leaving the room must be carefully disinfected and if I have to get food or coffee, a nurse has to come and take over since Abbe’s not allowed out of the room. He’s not feeling so well, but with oxygen, antibiotics, expectorant inhalations, nose spray and bouncing I think he’ll struggle his way out of this one too.

Bouncing? Well, it looks rather funny. The nurses put Abbe on top of a gigantic ball. At least a meter in diameter, and then they bounce him up and down on it. On his back and on his side. It helps dissolve the phlegm in his lungs and airways and makes him breathe deeply rather than the shallow gasps for air he can manage on his own. Strange things are happening. One can’t help but wonder how anyone ever came up with that idea.

Yes, yes, I said red coats, I know. Most of them are.

8 May 2005

Expectorant inhalation.

RS and pneumonia.

The day after we found out that Abbe’s immune system was all right he caught a cold. I love the irony of that, don’t you?

He developed a cough, his nose got stuffy and he had a hard time breathing. His temperature rose quickly. We were on and off the phone with the pediatric heart ward and when his temperature got as high as 40° C, they told us to go to the children’s emergency ward. The nurse said “We’ll call and let them know that there’s a heart-child coming in, so you won’t have to sit in the waiting room with all the others”.

One of our friends who happened to be visiting was left with Abbe’s brother, waiting for Granny and Grandad to arrive. There she was, stuck with a two-year-old watching teletubbies while we rushed to the hospital. We arrived, were sent on to the heart ward, and here I am, again, writing.

RS is a common cold virus that turns up every winter/spring. For an adult it brings on a heavy cold with a lot of phlegm and a temperature. For babies it’s serious, sometimes even lethal. For heart-children the risks are obvious. And if your blood already has low oxygen saturation, breathing difficulties aren’t going to help. In other words, Abbe’s a lot worse off than the rest of us would be with the RS-virus. He also developed double-sided pneumonia, along with the virus. We’ve seen better days.

5 May 2005

Immune system ok.

Now that the first heart surgery is over and it'll be a year or so till the next one, things are sneaking up on me. What will the consequences of the 22q11 deletion syndrome be?

Does he have a cleft palate? How can you tell? Does it show? I mean, I can see for myself that he’s not harelipped, but are there other types of cleft palates, ones that don’t show? And what if he has a lowered immune system? What then? Will we have to isolate ourselves in the future, for fear of risking Abbe’s health? What kind of life would that be? For us? For him?

And yesterday we met Solveig again. We talked about the syndrome in general and Abbe in particular. At the time of the surgery, they ran loads of tests to analyze his immune system and Solveig told us the results. “It looks really well. Better than you’d expect in a DiGeorge-child, and normal ones compared to a healthy child.” she said. Such joy and relief.

29 April 2005

Good-bye Von Rosen.

Today Abbe was let out of the splint. Instead he’s been given a frejka pillow splint. Just like the Von Rosen it keeps his legs at an outward angle, like a little frog. The great advantage is that it can be taken off at home and that means that every time we change Abbe’s nappie he gets to wiggle his legs about freely for a few seconds.

Best of all though – he can bathe at home.

26 April 2005

Return visit.

It’s now been almost two weeks since we left the safe haven of the hospital with help at the press of a button, for a life at home. With a half hour drive to hospital, at best. To my own huge surprise, the fear only lasted for a couple of days. It didn’t get any worse. We’re all right at home; we manage without all the great people at the 323-ward, even though I miss them at times.

Once a week we take Abbe to the orthopaedists to give him his bath. A nurse takes the splint off and leaves us in a room with a tiny bathtub and a few cloths. A quiet moment to ourselves with our baby, happily splashing around in the warm water. Naked. No splint, no nothing. Just Abbe. My favourite time of the week.

We’ve been for a few return visits at the heart clinic as well. Abbe’s not following the desired weight-curve. Big sigh. The oxygen saturation level is not improving either. Another big sigh.

13 April 2005

DIY cardex.

In hospital great care was put into keeping book of everything Abbe ate. On something called a cardex, notes were taken on (in addition to pulse, pox, temperature and other important things) every millilitre of food, whether taken by bottle or probe. And every nappie was weighed to see how much came out the other end. Like some sort of a nutritional balance account. I suppose it’s to know when extra resources are needed, drips and such.

When Abbe was released out last week he weighed 3875 grams. That is, 25 grams less than when he was born. Instead of having gained the half kilogram or so that would be normal during your first three weeks, he’s lost a little weight.

We’ve kept taking notes. Not the nappies, we don’t give a shit about them (haha). But we do keep record of how much he eats. Feeding times are still complicated and time consuming. One time runs into the other in a marathon-like blur and it’s hard to keep track of how much he actually eats. So I sat down at the computer and put together a cardex of our own. It might seem a on the edge, but I figure it's better to be safe than sorry.

9 April 2005

My brother. My very own little brother.

At home.

What can I say? Wonderful and scary at the same time.

8 April 2005

Stretching the limits.

It’s been three weeks since we got here. Three long weeks since we came stumbling in to room 3. What a roller coaster ride it’s been. News, chock, waiting, surgery, fear, calm, more news, chock, waiting, waiting and yet more waiting.

The surgeons had planned for Abbe to have a saturation-level of 80-85% after surgery. There have been several theories on why he’s not getting more than 70-75%. One is that his blood vessels might have “cramped” a bit after surgery. That they’ve not been used to the larger flow of blood that the correction brought on and responded by contracting somewhat. That sounds plausible to my layman ears. So they’ve been waiting for it to change.

Two weeks have passed and it still hasn’t. The saturation-meter (the pox) has been on constant alert. “Ah well, 70% will have to do”, said the doctors and lowered the alert-level on the meter.

– Well now it doesn’t beep, they said, you’re free to go home.

7 April 2005

Cutting the cord.

I don’t know if you have children. If you’ve experienced that peculiar feeling when you’re leaving the maternity ward and suddenly realise that it’s for real.

In hospital it’s all so well laid out. Food is served at set times, midwives help out, telling mommies how best to feed their babies. How do you wash the sore from the umbilical cord, how do you change nappies and what about the vitamins? They know such things. It’s like checking in to a theme-hotel. “Welcome to the Mum-dad’n-baby-inn – the hotel with full family focus”.

Then you get home. You walk through the door of your own home, your furniture, your bathroom and your CD’s. That’s when it dawns on you. “Shit, he’s staying here now!”. You can’t leave him (or her, for that matter) back, he’s for real. We’ll have to manage on our own now. Without the theme-hotel midwives.

If you’ve been there, I’m sure you’ve also been through the phase where you spend most of your waken hours watching your baby. When you peep into the cot over and over again, just to make sure they’re breathing. At least eighteen times a day.

I’ve been there. I already have a son. One without a heart condition. Here’s what I’d like to know: how the hell do I find the courage to bring Abbe home?

With a little help from my friends.

Bunny Rabbit holds the oxygene funnel.

6 April 2005


The oxygen-muzzle is gone. As is the probe. If you ignore (a contradiction in terms) the Von Rosen splint, Abbe almost looks like a normal baby now. Except for the huge scar across his chest, that is.

It’s nice to be rid of the probe. He can now be bottle-fed. It’s a hell of a struggle, though. Requires a lot of patience. 70-80 ml of mother’s milk will take between half an hour and an hour. By that time he’ll soon need to be fed again. But so be it. I desperately want him to learn. They’ve told us that heart-children often have feeding problems. So do DiGeorge-kids. Jackpot.

And. Like I said, no more muzzle. The small amount of oxygen he still needs is given to him through a funnel. As far as I understand, that’s what we’re waiting for now. For the oxygen-saturation level in his blood to rise. When it does, we’re going home.

This is how it feels some times. More focus on the pox than on Abbe.

4 April 2005


“Abbe’s not going to be a handicapped child, if that’s what you’re asking” How many days since I wrote that? When did the surgeon say it? 19th of March.

That was then.

The burden of knowledge.

I talked to my big sister yesterday. She happens to be a pediatrician. I told her about our meeting with Solveig and about Abbe’s diagnosis. My sister had heard of Solveig and she also knew some things about the 22q11-deletion syndrome, but because it’s a rare syndrome she needed to read up on it. She said she’d find out more and get back to me. That’s nice. She’s on two jobs here, half professional, half sis.

When she rang with a few links this morning she asked me to take all of it with a pinch of salt. “You have to keep in mind that in this information they’ve gathered all the symptoms that they’ve found in all the children with this syndrome. That’s a lot. That does not mean that all the children will have all the symptoms.”, she said, “Don’t panic when you read it, Abbe might never show any symptoms other than his heart condition”.

I read. And read again. For each word concentrating harder on what my big sister had told me.

3 April 2005

Feeling guilty.

I was hit by a strong feeling of guilt today. All over sudden I realised how many times I’d used words like mongoloid or retarded in an incorrect manner. “ This computer is f-ing retarded” on a slow laptop or “He’s a mongoloid” on a person you don’t like. God what a lousy fellow human being I’ve been.

Or, at least, what bad use of language. Because, ashamed as I might be right now of the way I’ve expressed myself at times, I’ve meant no harm by it. I mean I don’t dislike people who are mentally challenged or have Down’s syndrome. Just like I don’t dislike some of my best friends who are homosexuals. Even if I've made silly jokes on the subject at times …

Time to wisen up. Isn’t it weird though, what it takes for you to realise what a dumb-ass you’ve been?

2 April 2005


Granny and Grandad had to come through again like all the other times, these past two weeks. They promised to stay with big brother while my wife and I talk to the 22q11 specialist.

I had told my loved one, she had cried and I comforted. I had tried to see the good in knowing things in advance, being prepared with all sorts of questions. We had had some time since that other doctor gave me news earlier today. I’m not sure it helped.

Eventually a woman arrived. She had reddish hair, a white doctor’s coat and a singing Icelandic accent. “Hi, my name is Solveig, are you Abbe’s mum and dad?” She looked at Abbe for a while, and then gave him a little pat on the cheek with the back of her index finger. She sat down on a chair opposite us and started talking.

Catch22/DiGeorge is an unusual type of chromosome deficiency. There are about 20-30 children born each year in Sweden with this diagnosis. How severe problems it'll result in, varies widely from child to child. Apart from the physical problems such as heart conditions, cleft pallet, immune system trouble, lack of calcium, hearing or sight difficulties, there might be difficulties in concentration and learning disabilities later in life. I heard her mention ADHD, autism and more but I found it so hard to focus that most of it passed without reaction.

“I’ve met so many children with this diagnosis and they’re all lovely”, said Dr. Solveig. She seems a sweet enough person and I’m sure those words were meant to comfort us but they seemed to have the opposite effect. She left us there with lumps in our throats that were becoming impossible to swallow.

In spite of all the time we’d had to prepare I don’t remember asking her a single question.

More tears.

There I was, all alone, with the news of Abbe’s syndrome thrown on me. I would have to tell my wife shortly. Should I ring her straight away or wait till she comes in to take over? It was going to break her, I knew that.

The last two weeks we’ve spent so much time crying and for some reason I’ve taken on the part of the strong one. He who holds and comforts. Who says, “It’ll be all right” when she loses faith. And for some reason I’ve managed. I've become stronger. As if it were a task designed for me, where I absolutely must not fail. Maybe that’s how I function – focusing with the task at hand. Or it might be the way we work together, as a couple. When one stumbles, the other steps in to support.
I hope so.

Tough news – part two.

I was staring at the pox (pulse oxymeter) that’s connected to Abbe. It measures the level of oxygen-saturation in his blood and the reading hovers around the alarm level. Every now and again it beeps. By now I know how to cancel the alert and I do so again. As long as it goes up again, as it usually does, there's no need to alert the staff. Then they’ll just have to cancel the alert instead.

There was a knock on the door and one of the doctors on entered. “Hi, just you and Abbe here today?” she said. “Yes, my wife is at home with Abbe’s brother, she’ll be along later”, I explained. “Right, I wanted a word with you. Is that OK? Even if your wife’s not here?” she asked. I supposed it was.

– Do you remember the test we did on Abbe, when you first came here?
– Mhm.
– Yes eh, the chromosome test.
– Mhm.
– Well, we have the results from it now and it shows that Abbe has a chromosome deficiency.
– What?
– It goes under the name of CATCH22 or DiGeorge. Or 22q11-deletion syndrome.
– 22q…what?

I wanted to shout at the top of my voice “Take your f-ing shit syndrome and go to hell! Abbe’s got a heart condition and something wrong with his hips and that’s already more than enough!” I wanted to stand up, leave the room and kick at anything and everything that got in my way.
Instead I mumbled, in a thin voice:

-Mhm…but…what does it mean?
-Well, hm, he might have learning difficulties. Some have a lowered immune-defence and some…eh..do you know what?
-There’s a doctor in this hospital that specialises on this particular diagnosis. I could ask her to call on you this afternoon, when your wife is here too. She’ll be able to answer all your questions. All right?
-Yes…all right.

1 April 2005

I’m sorry.

I might have been a bit rough on the orthopaedists the other day. I do understand that it’s good for Abbe’s hips to get the right support at an early stage. But still. There’s a difference between heart-people and bone-people.

I stand by my opinion.

Despair. And hope.

There was this tough little guy in room 3 with Abbe, I'd guess six years old. A couple of days after his surgery his parents and the staff were helping him get out of bed. Watching that hurt. He was transformed into a pitiful little boy, squealing with fear of the pain. I couldn’t help but wonder will Abbe have to go through this at some point?

But then, day before yesterday, just a few days later, there he is wrestling with his sister on the corridor floor. That’s hard to beat. Watching the children in the ward making speedy recoveries is reassuring. So is talking to their parents, sharing their experiences. Their stories of happy little ones, bursting with energy, provide you with the strength to keep going.


The joy of splashing around in warm water. No nappies, no splint and no wires.

Abbe’s having a bath!

All the wires and stuff are gone, except for the tube and the oxygen-muzzle. Great! They’ve even taken the big bandage off the scar. All he has now are those surgical-strips, or whatever they’re called, to keep it safe. And it’s time for a bath.

But because Abbe has his Von Rosen splint (you know the thing for his hips) we need to go to the orthopaedic ward to bathe him. He can’t have a bath with the splint on since there’s not meant to be any moisture inbetween the thing and his skin. After the bath, when he’s nice and dry again, it takes an orthopaedist to put the splint back on.

But still. He’s having a bath.

31 March 2005

Bearing with it.

- Where do you find your strength? asked a friend. I really don’t know. Sometimes you do feel strong but most of the time you’re far from it. It’s a bit like the incredible Hulk, I suppose. When it’s really needed, you find powers within that you didn’t know you had. Hidden away in some spare energy tank inside. Good thing you don’t have to turn green and tear up your clothes.

There are times when it feels as though our part in all this is the easiest one. Compared to people around us, that is. It might sound weird. Abbe’s our little baby and obviously the fear and pain dig the deepest into our hearts and souls. But having said that, we’re right in the middle of it. We get to see him all day everyday, we get first hand information on his condition from the experts and we also receive the comforting that they’re so good at. We’re constantly working on it. Our loved ones receive messages on how he is and then they’re left there. With all the worry but without the help that we get.

Of course we have trouble finding that strength at times, but we’re doing all right. There’s no choice. You can’t quit; you have to bear with it. Being there for Abbe and finding the strength to give our other son as normal a life as possible. To comfort each other and be strong for our loved ones. We have to be prepared for setbacks and keep looking ahead. And we have to believe that Abbe will be okay and that one day soon he’ll be coming home with us.

How I look forward to that day.

Support in life.

Lying on your side is good when you’re just out of surgery, but that's easy to say when you’re stuck with a VonRosen splint. Lucky are those who have a Teddy at times like this.

30 March 2005

What can you say?

I dropped by work today. They wanted to hand over gifts, offer congratulations and support. Interesting that, by the way. I’ve noticed that friends and acquaintances seem to find it difficult to relate to the whole thing. They want to congratulate us on the birth of our new baby. But they also want to tell us how immensly sorry they are about the situation that we’re in. They’re left standing there, like a donkey between two haystacks. The ”congrats” one and the ”I’m so sorry” one. And they haven’t got a clue what to say. Not at all strange, if you ask me. What would I have said? It’s great and so sad at the same time.

In any case, I was at work. We were sitting in our big conference room having coffees. They had bought gifts for Abbe’s big brother. Such a brilliant idea. He, if anyone needs an extra dose of encouragement right now. A huge box of Duplo (and a spare one, to be kept in the office, in case one needs to bring the children to work).

And then there was Abbe’s gift. He is, after all, the cause of all this. A tiny teddy bear and a card with two words that really got to me. ”Go Abbe”, it said. So well put. Everything you want said but have trouble putting to words, captured in just two. I swallowed and swallowed again, but the lump in my throat kept growing. I felt the tears coming and bent my head down and shut my eyes really tight.

Please let them be quiet now, I thought, I can’t answer any questions.

29 March 2005

Every-day-life at the 323.

This is becoming routine. After Abbe had left the 3-room we were given a room of our own, where one of us stays over night with Abbe. We take turns in staying here and at home. Abbe does have a brother, and he to needs us right now, probably more than ever. We’re more or less taking care of ourselves now; the staff comes in once every three hours, 24 hours a day, to run tests and make check-ups.

There’s a kitchen in the ward for parents. You keep food in plastic bins tagged with your child’s name in special parent fridges. There’s a jar where you put a Swedish crown for each cup of coffee you drink. When we’re out of coffee, we make some more, pour it into a thermos and put on a bit of tape stating the time at which the coffee was made. That’s about all there is to do around here to make time pass and keep your nerves in check. Drink or make coffee. Hence, the coffee here never gets a chance to become older than freshly made.

Anyway, it’s great to have an option to the poor excuse for food that is on offer in the cafeteria on the ground floor. We’d had enough of that after the first few days.
Today we cooked fresh pasta with pesto and sun dried tomatoes.

26 March 2005

Big brother’s visit.

Today big brother came to visit Abbe for the first time. It was exciting. He must be wondering. Why isn’t Abbe coming home? Why has he got a tube up his nose and sticky tape on his head? Why do I have to wash my hands with the smelly stuff that makes your hands go all cold before I go to see my little brother?

We’ve tried to explain things to him, as best we can, but how much of all this can he actually grasp? How much can a two-year-old possibly understand of what is going on? He’s only a baby himself.

25 March 2005

Abbe is breathing.

Back in the hospital after the early morning phone call we hurried into room three in the 323 ward. The calm, reassuring smiles of the staff did wonders for morale. He was back home again. Back from his adventurous excursion up on the sixth floor. ”He’s over there” said one of our favourite nurses, ”and he’s looking great”.

There are fewer wires on him now. They’ve taken away some of the drainage leading out fluids. One, I think, from where they operated on him, and the other from his left lung. The right lung drainage is still there. But most importantly Abbe was extubated late last night. That is, they took away the respirator that has been his external lungs for the past few days.

He’s now breathing on his own.


At three o’clock this morning our phone rang. Half asleep I answered it and a voice at the other end said

”Hello is this Abbe’s father? I’m calling from the pediatric intensive care unit at Queen Silvias Children’s Hospital”. My God! Why do they have to have such a long name, I thought. Get to the point. I was thrown, in a matter of seconds, from having been sound asleep in my bed, to a pulse of a 180 beats per minute. I was petrified. ”Speaking”, I said, ”what’s wrong, has anything happened?” This is when he realised what effect his phone call had had and he said, ”Oh, no, I didn’t mean to scare you. I just wanted to tell you that Abbe’s been moved to the ward now, I didn’t want you coming here tomorrow wondering where he’d gone.”

I don’t know. It’s a first for me. Having an infant in an intensive care unit having undergone serious heart surgery. A nightly phone call from the ICU is not something that I’m used to. Maybe I should’ve just put the phone down, been happy with the good news and gone back to sleep?

Maybe, but it scared the hell out of me.

24 March 2005

Pain relief.

As recently as the 1960s it was commonly believed that infants could feel no pain and surgery would be performed without anaesthetics. Sounds unbelievable to me, but a nurse told us today. Considering that, 2005 seems like a pretty good year to have been born. Nowadays they’re working on a brilliant method of determining how the child is feeling and if, and if so to what degree, it is in pain.

On a three grade scale they try to evaluate things like frowns, squinting, tensions in mouth and tongue, shivering chin, arm and leg movements, breathing patterns, crying and consolability. If the sum total exceeds a certain number, they administer pain relief. The higher the number, the higher the dose, I guess.

Lots och technology for a small heart.

Automatic pumps for metering various medicine into Abbes bloodstream.

This machine measure a lot of things, including pulse, blood pressure, oxygen saturation in the blood.

Pain relief.

Respirator - Breathing for Abbe.

Abbe at PICU on the morning after surgery. 8 days old.

Pediatric ICU.

Abbe has gone through surgery. He’s in the ICU – the intensive care unit – and is under the circumstances all right. That’s not something I can make out for myself; all I see is my loved one, conked out behind a colourful nest of wires and tubes. But that’s what they’re telling us. ”Everything looks well”, they say.

I’m not really that worried now. Of course I’m sad that we’re in this situation and I wonder where it’ll all lead. But people are so professional around here and I trust them to 100%. I mean, they’re doing what they’re experts at, what they’ve been trained to do for years and what they have done so many times before. It’s all beyond me anyway; I can only watch them doing it. As a by-stander. But every now and again I can’t help putting my nose to some square inch of Abbe’s skin, visible through all the equipment, just to smell him.

Abbe’s bed and its surroundings would remind you of a cockpit. The respirator, EKG, pox-, blood pressure- and pulse meters, pacemaker and automatic pumps with calcium, morphine, glucose and such. Moreover a number of tubes with oxygen, pain relief and other stuff that he needs. From his body a catheter and different kinds of drainage tubes. And there’s a grand buffet of drugs on offer, so that he’ll never be in pain. I’ll tell you more later.

Right now I will just sit here and look at him.

23 March 2005


I have had the worst moment of my life.

At four o’clock this afternoon we took the elevator from ward 323 to the sixth floor. That’s where the surgical ward is located. Abbe was in my arms when the anaesthetics nurse connected the soporific to the needle in his scalp and slowly I felt him getting limp and heavy. I carefully put him back into the big crib, we kissed his forehead and said goodbye. Then my little being was wheeled, sleeping, through the doors marked ”surgery” and I died.

I don’t recall ever being so tired. Had I been awake for three subsequent days and nights and ran the New York marathon a couple of times in a row I would have been left with more energy than at that point. It was as if someone had punctured all my energy supplies in one blow. And all the spare ones. When the doors of the elevator closed, we fell into each other’s arms and cried.

Loudly, desperate and catharsic.

The D-day.

Today my little sweetheart goes into surgery. One week old. It’s said that the size of your heart equals the size of your fist. I keep thinking of Abbe’s tiny seven-day-old hand.

I think of nothing but that.

22 March 2005

Mc Donald’s is great but there’s no place like home.

We’ve checked out of the maternity ward. It’s a relief being away from all the happy parents holding baby bundles. Don’t get me wrong. I don’t begrudge them. Not at all, I have my own bundle, even if I can’t hold him as much. Especially not with his VonRosen splint. It’s a bit like carrying a small box. A lumpy and unsteady little box. With a needle in his scalp, a tube up his nose and an assortment of wires connected to his hands and feet. But it’s nice, still, to be away from all the looks in the maternity ward. The knowing looks, head tilted, from the staff and the questioning looks from the other parents, eyes nervously searching for the baby we’re meant to be wheeling around.

We live just fifteen minutes from The Queen Silvia Children´s Hospital. Thank God. So now we sleep at home and spend our days in the hospital. But imagine coming from another part of the country, having to move your whole family here for the length of the hospitalization period. Maybe having to spend weeks, or months, in the Ronald McDonald house. What a bother. Good that it’s there, though. The house is great and welcoming in every way. And I’ll never eat at Mc Donald’s again without leaving my change in the little plastic box by the cash registers. But there’s no place like home.

Cardiologists and orthopedists.

I don’t care what they say; there is a difference between doctors and doctors. Here in the children's cardiac unit, people are (apart from obviously being scientifically skilled) equipped with a huge dose of warmth and sensibility. That, unfortunately, cannot be said about orthopedists. I’m aware of the fact that I’m sticking my chin out, and that I may well get a mob of angry orthopedists on my tail, but it has to be said. They seem more like car mechanics to me. Technicians. There to fix an object. Hammers and nails, saws and screwdrivers, bang on. The fact that there is a person stuck to the other end of that broken arm does not seem to bother them.

Today, three people from the orthopedist unit came charging into room three. ”Where’s Abbe? We’re equipping him with a Von Rosen splint”. Abbe has, on top of his heart condition a congenital hip dislocation. That means that one or both of his hips were dislocated at birth or will dislocate easily. The paediatrician in Borås mentioned it at the first routine check but with the chaos that then emerged we had simply put it on hold, left it to be dealt with later. Anyway, the condition as such will require Abbe to wear one of those splints for a couple of months.

Abbe’s heart nurses tried their best to convince the orthopaedist troop that he’s going into surgery tomorrow, he’ll have to be washed thrice with disinfectant beforehand and under no circumstances can the splint be left on during surgery. ”Can it not be left until after surgery?” pleaded the staff from ward 323. ”No. Every day won at the start will save weeks at the end of treatment” was the robotlike answer given by the orthopedists.

My wife ran out of the room crying. ”Now, now, it’s not such a bad thing, this splint,” said one of the mechanics. But with just an ounce of empathy she could have figured out that it was not the bloody splint that was causing the outburst. That a congenital hip dislocation is a piss in the ocean compared to what Abbe has in store for him. That she was in a ward, with new parents who mightn’t be in the most stabile or happy of conditions. That their charging in might actually have been the straw that broke the camel’s back. But that ounce of empathy was sorely lacking.
The splint was coming on.

Crammed at the PICU.

It seems odd that you have to wait for days for a surgical procedure this important. It’s comforting to know that as long as Abbe gets his Prostivas (that is what the prostaglandin drip is called) he’s in no danger. Or so they tell us. He’s next on the list with the surgeons. Because it’s an emergency, he will be put ahead of all planned surgeries. It’s just that the pediatric intensive care unit is crammed at the moment. And when that happens they don’t perform surgeries other than in cases of extreme emergency. With his drip Abbe does not fall under that category.

But just a minute ago, Abbe’s nurse came to tell us that the operation is planned for tomorrow.
Relief! Anguish!

21 March 2005


We waited nine months for Abbe to come into life. Here we are now, waiting for surgery to keep him here. It’s heavy at times.

Really heavy.

Costly drops.

Abbe is not breastfeeding. It’s too much of an effort for him. His mother has made many brave attempts but it doesn’t seem to be happening. He is struggling just to stay awake, the poor thing. Sucking and working to get nutrition would be too much of a strain on him. It would cost more energy than it gave, so to speak. But mother’s milk is very nutritious, so my wife (who is just beginning to make her way around the place without a wheelchair) pumps it out and stores it in bottles.

They provide you with electric pumps to simplify things. I understand it’s hard enough as it is. The pump brings cows and farming to mind, a thought I haven’t shared with my wife. She’s working like hell, I feel for her. The milk bottles, tagged with the baby’s name and the time at which the milk was pumped out, are kept in a fridge. When Abbe’s feeding time approaches, we heat the milk up and feed it to him through a bottle. Well, the tiny amount he has the energy to eat. The rest of his minimal requirement, we give him through a tube. This was pretty hard to get used to, but I’m getting there. I have to.

By the bed.

Night staff made a sign. :)

Ward 323.

There is, all things considered, not one negative thing to be said about the staff at the heart ward in Drottning Silvia’s Children’s Hospital. I have never before met with such professionalism, empathy and warmth. I suppose this is what they’ve been trained to do and get paid for, but I can’t help feeling that they really do care. They’re all well aware of the fact that a few hours prior to us stepping through the doors of room three, we were just happy new parents of a beautiful baby boy. Without a single suspicion of what would be lurking around the corner. They’ve let it all take time. Allowed us to let things sink in at a pace we can handle.

Everything around here goes along at a steady pace, all part of an ingenious plan. You find yourself lulled into a strange world of breast pumps, tube feeding and a meticulous weighing of nappies to check incoming and outgoing. Terms like saturation, VSD, CVC, EKG and pulmonalisatresi are becoming part of our daily life.

In a neat and orderly manner, meetings are booked – with surgeons, anaesthetists, therapists and physiotherapists. We’re given a guided tour of the ward and of the pediatric intensive care unit (PICU) and a thorough run through of the routines. All the time accompanied by ”Can you manage this now? Or ” We can leave it for later if you like, just let us know”. As soon as they’ve seen any signs of us not coping, being close to tears, someone has been there to take us to a quiet corner where we’ve been left to ourselves. To cope. To deal with the unthinkable.

All along the corridor walls are posters with photos, taken by parents, of babies and children more or less recently out of surgery. The posters, and a few photo albums, are used in an educational purpose to prepare us for what’s to come. ”Squint when you take your first look and then come back in a while for a second look” is the advice we’re given. An infant with a huge scar on his or her chest, the entire body covered in tubes and wires is not a pretty sight. Especially not when that infant is your own.

I’ve walked miles in these corridors by now, each time pausing a little longer by the posters, hoping thus to be prepared for seeing Abbe after his surgery.

Is that even possible?

20 March 2005

And pictures.

This is how a healthy heart works. Oxygen deficient blood arrives in the right atrium, flows through to the chamber and is pumped out into the lung artery to the lungs, to be oxygenated. The oxygen rich blood then goes from the lungs to the left atrium of the heart to be pumped out into the body.

This is what Abbes heart condition looks like. The lung artery is blocked (pulmonalis atresi) so the oxygen deficient blood cannot get to the lungs to be oxygenated. Instead, the blood leaks out through a hole between the chambers (VSD) and out into the body. This is all theory. In real life you cannot live like this.

After his surgery, the oxygen deficient blood from Abbe’s body will leak from the left heart chamber to the right through the opening (VSD). There it will be mixed with the oxygenated blood from his lungs and pumped out into the aorta. A small GoreTex tube (shunt) will connect the aorta with the left lung artery, so that some of the blood will flow that way and into the lungs to be oxygenated. The rest of the blood goes on out into the body. That blood will be a mix between oxygen rich and oxygen deficient. They estimate that Abbe’s blood will be oxygenated to about 80%.

Andra bloggar om: , , ,

Here’s how it works.

Right, I’ll try to explain Abbe’s heart condition as well as I can. Just bear with me.

The heart consists of two halves (each with a chamber and an atrium, but we’ll get back to that). One half pumps oxygen deficient blood into the lungs for the blood to fill up on oxygen. The blood then runs back into the heart and into the other half that pumps oxygen rich blood out into the body. That’s basically it, kind of like the figure eight (extremely simplified). Between the halves, no communication is meant to exist. That’s where Abbe has an opening, (VSD). Contrary to what you might think, this is a good thing for him, since he also has another problem. The artery that is meant to lead from the lungs to the heart has grown together (Pulmonalis Atresi), so there is no way for the oxygenated blood to get in that way.

But how can he be alive? Well, when you’re in your mother’s belly, you don’t use your lungs; you’re supplied with your mother’s oxygenated blood. The blood then follows a different route through your system. Kind of a shortcut. And because that shortcut exists, a small amount of oxygenated blood can escape and find its way through the little opening in Abbe’s heart to be pumped out into his body. Mixed with oxygen deficient blood, but still. The problem is that this shortcut – Ductus – closes a day or two after delivery. That’s when it is time to swap systems and start using your own lungs.

That’s what was beginning to happen to Abbe and that is why he got sick. If it had closed off completely, he would not have been able to oxygenate his blood at all. He would have died. Good thing they discovered it there and then. I think people are sent home from the delivery wards way too early. Seriously.

Abbe has been given a drip to keep the Ductus in an open position. That was the prostaglandinet they gave him in Borås, before he was sent off in the ambulance. But it’s not a permanent solution. As you might have guessed he’ll have to undergo surgery. I think the first operation will be as early as the start of next week. They’re going to insert a small tube to replace the Ductus and leave the blood free passage through the shortcut. Sort of like hot-wiring the heart. The blood will not be 100% oxygenated, but enough to for him live on. For now.

19 March 2005

Forget NYC Marathon.

We have now spoken with one of the cardiac surgeons. He explained Abbes heart defect to us again, and slowly I begin to understand a little. It was, of course, very long since I learned in school how the heart works, and in all honesty, I don't remember much of it. But I have this feeling that now, I will be more or less an expert with time. In any case, he told us objectively and precisely what they'll do during the operation, what can go wrong and what we don't have to worry about. I realize that they have done this many times before and that they know what they are talking about. Very convincing and reassuring.

On the question of how Abbe will cope, we got the answer: "He will be able to live the same kind of life as you and I do. He should perhaps not bet on winning New York City Marathon, but Abbe will be no disabled child, if that is what you mean" A kind of light in the tunnel, that is.

He also told us that they have taken a special blood test from Abbe. Apparently the heart defect of the type Abbe has, is common amongst children with a certain cromosome dissorder. So they wanted to take a test to rule out the possibility that he has the dissorder.

But why would he?

Odd birds.

Abbe lays in dep 323 - childrens cardiolgy unit - but we live in M&C unit. One is located in Queen Silvias Childhospital and the other in the Gynecology house. In other words, in two different buildings. So when we eat, we take the lift down to the underworld and roll off to nieghbour building to go up with another lift there. And then the same procedure back. A bit cumbersome, but it works.

However, it feels very strange when we are on the M&C. There they are. All the mothers and fathers – alternatively, mothers and grandmothers, depending on which country you come from – with their small babies in those translucent plasic boxes. Everyone but us. We eat breakfast, lunch and dinner at M&C with red tearful eyes, but with no baby.

I can tell that they're all wondering.

Pulmonalis Atresia with VSD.

I didn't sleep many hours last night. They had squeezed in one of them extra bed for $40 from IKEA in the room intended for the mother and child. Nothing against those beds, but this one had been hosting a few thousand new fathers, so the foam rubber had long since lost its springyness. Well, whatever. It hadn't mattered if they gave me a brand new super bed. I hadn't slept anyway. Several hundred undergroud corridoor meters away, lay our little baby boy, connected to all kinds of technology to monitor that he remained alive. And here were we. "Try to sleep a little now, you need it," said the midwife. Well, thank you.

Last night, after what is felt like an eternity since that cardiologist had given us the implausible judgement, someone finally came and told us what they found during the examination. A cardiologist told us that Abbes heart was deformed and that his defect was called Pulmonalis Atresia with VSD. That is, the lung artery is blocked and there is a hole between the chambers. She showed a drawing how a normal heart looks and how it has become in Abbe. But I think they'll have to tell me all about it quite a few more times before it goes into my head.

I listened very carefully, but I heard nothing.