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?
25 September 2005
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.
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.
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