Hi My name’s Breanna and I’m 15 and have PKU like your husband, I have 5 sisters and brother and only one of them has PKU aswell (Erica does and she’s 8). The reason your husbands family probably doesn’t talk much about his PKU is probably the same reason that we don’t talk about it much in my family, it’s just become a part of life. Nobody in my family thinks of PKU as ‘weird’ or ‘unusual’ or anything like that anymore because they all have dealt with it for 15 years now.
To answer one of your question I’m almost positive (but others can correct me if I’m wrong) that you would need to be a carrier of the PKU gene and carry it aswell (this doesn’t mean you actually have to have PKU, just be passing the gene on) and then if you do I think there is a 1/2 chance your child with have PKU. See your husband has PKU so he has all 4 recessive PKU genes, and he’ll pass 2 of those to your child which will make them a carrier, if you have 2 recessive PKU genes and 2 normal then you could either pass on 2 normal genes meaning your child would be just a carrier or 2 PKU genes meaning your child would have PKU, although since PKU occurs usually only in 1 out of every 15,000-20,000 babies born it is an unlikely hood that you’ll be a carrier, but you should beable to go to your doctor and they should beable to do a simple blood test on you to find out if you carry the gene. They did this on my brother after I was born and diagnosed with PKU because he was developmentally slow (he’s a year older then me) and they thought he might have had a missed case of PKU but it turned out he was just a carrier.
To answer your next question I don’t believe there are any test that you can do during pregnancy to determine if your child has PKU because they have to wait a few days after birth to do the newborn screening (all babies get it to test for PKU and many other genetic disorders and it’s a heel prick and a few drops of blood). Anyway they have to wait a few days after the child is born so they can give the baby enough time for phenlalanie (that would be what your husband counts in his food, not sure how much you know about his PKU) but if the phenlalanie level comes back higher then normal then they have PKu if it’s normal then they don’t. If your child does have PKU they will not be harmed during pregnancy but will have to be put on a special diet that I’m sure your husband might be on unless he is off diet, which in that case it’s highly suggested he be back on before you do have a baby because it could case defects in the sperm if his levels are high.
I hope this helped alittle and if you have other questions or if I didn’t make something clear enough just feel free to leave a message here. nBreanna