PKU.com Community Discussion Forum New to PKU.com decided not to have children Reply To: decided not to have children

#5300
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BreaMarie91
Member

Chargers1,
I believe the reason Marsha said her daughter decided not to have children is because she isn’t doing well with her diet. And if that is the case and she is off diet then she won’t beable to have healthy children (that is unless she goes back on diet). I’m not saying people with PKU can’t have healthy children but for that to happen they have to be on diet, drinking their formula with levels between 2-6mg/dl (sometimes 2-4mg/dl depending on your doctor). Marsha had said that her daughter was off diet so if her daughter became pregnant while being off diet then the baby could (and chances are would) be mildly to severely mentally retarded, have heart problems, be premature or even have a miscarriage ect. If she were on diet though, she could have happy healthy children (and none of her children would have PKU…that is unless her husband is either a carrier (then she would have a 50% chance of having a PKU child) or if her husband had PKU aswell (which would be a 100% chance that her child would have PKU).
I guess that is one huge reason why I’ve decided to stay on diet and keep my levels where they need to be and avoid trying high phe foods. Someday I know I’ll want children and to have to go off diet and then return would be hard (atleast I imagine). Also Marsha I’m not trying to scare you but eventually (weither your daught is going to have children or not) it’s high suggested she goes back on diet. I’ve met adults who went off either during childhood or as a young adult (in their 20’s or 30’s) and they aren’t doing to great. One women couldn’t not walk (she is now back on diet but she said it won’t change that her muscles have broken down) and another man has a very hard time keeping a job. So again not trying to push or scare you, I’m just saying that maybe something your daughter might want to think about somewhere down the road, even if she isn’t going to have children it will still effect someone….HER! nBreanna

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