Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

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Hi there!

Congratulations on your son.

…I don't really know how to start here…

I'll just explain to you what my situation is and my thoughts to some of you questions.
First of all my parents are both carriers. So the first time my mother was pregnant they didn't know about PKU also.
As the baby was born (my sister) my parents had to learn all the PKU stuff. They did and it doesn't seem to be that bad, because later they got another son (my brother who doesn't have PKU) and than finally me (yep, PKU).
I'm sorry I can't tell you what was going through the minds of my parents as my sister was born and what their thoughts about risking another baby with PKU was. We just didn't speak too much about it, even though I asked myself this question sometime.

But the point is that I can't and never even thought of blaming my parents for that. PKU belongs to me, it partly defines me and the strict diat surely left some marks in my character (you need to be faithful and learn pretty early to take the responsibility for yourself).
It's hard to explain but for me (in my mind) their have been only two options:
1. To be born with PKU  2. Not to be born at all.
And I can tell you that I am very happy that my parents decided to have a third baby ;)

Also I'm very proud of my parents to deal with that situation and after all I think they had a harder time dealing with PKU than me and my sister.
BUT! it's not that hard at all!
I don't know where you live, but there's a high chance that a there is a group of PKU related people somewhere reachable who would like to help you. It's a great way to share ideas and informations with other parents with PKU children.
There should be a few producers of low-protein food out there. I can't help you much on that though because I am from germany. You surely know about this
Someone else could maybe add some informations here.

Now talking about the quote about abortions:

Don't think about that to much. It is an option (to some… mabye?), so people should be informed about it. I don't understand it myself, because someone who has been through all that once knows how to deal with it and the second time it would be so much easier and normal. But I suppose the information was written by someone unrelated to PKU anyway, so he/she/they doesn't even understand how this strict diat can become normal and a routine in everyday life and doesn't mean problems and suffering all your life hehe.

I hope I could calm you down a bit.

Feel free to ask questions.

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