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.

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.

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.

My brother. My very own little brother.

At home.

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

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.

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.

Percentages.

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.

Blues.

“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.

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?

Solveig.

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?
-No.
-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.

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.

Cosy.

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.

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.

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.

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.

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.

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.

Help!

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.

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.

Surgery.

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.

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!

Waiting.

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?

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: pulmonalis atresi, VSD, hjärtat, GoreTex

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.

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.

Polaroids

I didn't bring a camera when we first came to the heart unit, but this kind nurse ran off to get a polaroid camera.

Tough news.

When we finally arrived at the hospital in Gothenburg, we looked up the mother & baby unit as the midwife in Borås told us to do. Now afterwards, I realise that perhaps it had not been so wise to take the car, in the state we were. The passenger seat folded to lying posstion for my wife to stand the pain, and myself with a focus on the road equivalent to a blood alcohol content of half a per cent on the alco meter. But it seemed such a hazzle to have the car left behind in Borås. We were just going for a quick check at the hospital i Gothenburg, weren't we?

Staff at Queen Silvias Hospital's M&C unit welcomed us with the head tilted to one side saying things like "Oh it is you, ooh, come here dear and we'll help see what we can do." We got a room and were offered some food.
Don't think we had much to eat at all, to be honest. We only wanted to see our child. "It's quite a distance to walk, I'm going to organize with a wheelchair," said a helpful midwife.

After a five minute safari in the underground corridors, we rolled in to the children's cardiac unit at Queen Silvia Children's Hospital. We were shown in to room three, the department's 24h guarded room, where three children's cardiologs (child heart specialists) was investigating Abbes heart, with an ultrasound machine. He was connected to so many wires and hoses that I hardly saw the small body behind all the equipment. They spoke a language that certainly was for the most part Swedish, yet was not possible to understand for us. But the focused tone of their conversation gave a hint of a moment of truth.

– Uh, we'll have to sit down in peace and quiet with you a little later and talk about your sons heart condition eh… you have understood that he has a congenital heart defect, haven't you? said one of cardiologes.

Smack! Just like that. Just what we didn't want to hear. The room was spinning and panic filled my body. "Erh...no," I managed to say. "Or, should I say yes, I think we're starting to realize it now," I stuttered. He couldn't of course know what information we had received or not before. We just stepped into the room. I don't blame him, not at all. To be honest, I don't know if there is would have been any other way to find out about it, that had been better. Frankly, I don't think there is a good way to learn that your newborn has a heart defect.

The neonatal fog.

From the neonatal unit I honestly don't remember much. I cannot say how long we were there. Could have been four hours, but just as well thirty minutes. I tried to comfort but without understanding what happened, why we suddenly found ourselves in a chaos. They made a heap of tests. Lung X-ray, blood pressure and a whole series of blood tests, to rule out the possibility that the low oxygen saturation was caused by an infection. By this time Abbe got oxygen continuously. He also had a needle in one of his veins on his head where he received prostaglandin. It is possible that they explained why, but I cannot remember understanding any of it just then.

– We have excluded this and this (can not remember what they said) and now only remains to check the heart, so he has to go to Queen Silvia’s Children's Hospital in Gothenburg. There's already an ambulance ready and waiting for him downstairs, and "nurse so and so" will go with him, so you don't need to be worried.
- Eh ... all right, I stuttered and we saw the little bed roll out of the room surrounded by staff.

Control and chaos.

Finally it's time. It is our turn to step in to the paediatrician who had the honour to do the round at the mother & baby unit. She examines and pinches him, just as it should be. She looks and listens. But she kind of gets stuck a bit with the stethoscope on Abbes chest, looking thoughtful and concerned. She listens and moves it forward and back.

At the same time I can see the nurse who made the screening test, eager to hand over the envelope with its so far secret results to the doctor. "Hmm, I hear some murmur from the heart," said the doctor. "But it doesn't need to be anything to worry about," she hastened to add. The nurse with the envelope cannot stay longer, but hands over the information. Abbe had an oxygen saturation of 48% in his blood when the test was made. Normal is 100%.

"We have to ask the neonatal intensive care unit to examine him closer," said paediatrician. I – who did not understand the seriousness yet - thinking that they are probably going to tell us when the time comes. But suddenly I find myself half running after a nurse through the corridors of Borås hospital with my newborn son in my arms. A nurse is pushing my wife, who can barely stand because of the pain from the operation, in a wheelchair. Everything happens so incredibly fast.

Something's wrong.

I hurry back to the room to not be late for the medical check-up 36 hours after birth. That's when they check if everything is as it should, in order to send people home as soon as possible. I know it sounds a little querulous, and a little cynical, but for me this has become an incredibly important symbol of that something is wrong with the savings in health care.

I dance in with a bouquet of flowers and look forward to proudly carry the little boy in to the doctor. My wife looks pale. She has been feeling very bad after the operation, but this is something else, that I notice directly. "There's something wrong with him," she said. "Noooo, why do you say that?", I replied in the belief that she felt so worn down after the birth that she couldn't cope more.

It turned out that in our region they were doing a screening test. They measure the oxygen content in the blood of small babies before the medical examination, to see whether that can detect hidden heart defects earlier. That's what a nurse had done just before I came back from my lunch. But she did not grasp the odd data. They were so low that she redid the test several times.

"Well, she probably must have done something wrong," I tried to calm, while my own concerns came creeping up on me.