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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Hello Kayleigh,

Our son was born May 23rd, and recently diagnosed with PKU. Just thought I would pop by and see how things are going for you. Seems we are simular in stages, as Riley would be just slighly older than Jacob.

Our story…

Jake has two mommies. I am one, and my partner, his biological mother is obviously the second. A friend of ours was a donor for us. Unaware of the fact they were both carriers, our lil angel was diagnosed with PKU. Due to incompetent cervix, my partner went into premature labour at week 26 gestation. She was air lifted to a hospital which was better able to care for her and baby should he be born early. He held out two more weeks, and was born at 28 weeks. He was transferred back to our town at week 30. (Just this week) There were so many complications that could have resulted, but against all odds, he has been wonderful!! PKU has been his only stumbling block. When we first looked into it, I thought it was completely terrible, and how could we adjust as a family to his needs. We also have a 10 and 11 year old. This site has been wonderful in helping ease our minds. Things could truly be worse.  They are still testing his levels and from what I understand at this point he is fairly low, and requiring no diet intervention. We are optomistic (or perhaps hopeful) things will stay this way. 

I have to say, it helped hearing the struggles your husband is having, where you have moved to more of an acceptance. I am firm in that there is no need to place blame. This is nothing we could have controlled, and nothing to give a second thought to. My partner agreed, it was not donors fault, however, struggled with her own role in our son having this disorder. I think she has accepted it now, but it was difficult for me to completely understand why she was beating herself up. As for donor, we have alerted him of the fact he is a carrier, as he does have other children, who may like the heads up, but the thought of stopping them (the children) or him,  from having children was never a thought.

We are in Canada by the way :) Nice to meet you… all of you! :) 

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