Blood Levels · Moms · Science

I’m Pregnant!

A little about maternal PKU

I recently announced to the world (via facebook) that I am pregnant. I am three months along. I wanted to post about this because this is an important topic for phenylketonurics. Some people have asked how being pregnant is affected by PKU. So here’s my answer!

about 15 weeks and starting to show a teeny bit!

The growing fetus receives nutrients through the placenta – from mommy’s blood to baby’s. So even if the baby does not have PKU, the blood Phenylalanine levels of the mother will affect those of the baby. Also, the levels are even more concentrated in the baby. High levels of Phe are toxic to the baby and can cause serious issues such as mental retardation and developmental problems. So obviously this should be avoided.

For me this just means being extra careful with how much protein I eat. The levels I normally have are within the safe range for pregnancy, so I haven’t had to change much. I am being monitored by a PKU doctor and a dietician. I take my blood level every week (through a finger poke and mail-in) to make sure they are in check. My dietician had me increase my formula because your protein needs go up during pregnancy. So that’s about all that is different.

I am told that even as recently as when I was born the medical community believed women with PKU should not have children. I am so grateful that understanding and knowledge have changed and that I am able to have a closely monitored and healthy pregnancy!


17 thoughts on “I’m Pregnant!

    1. Great news!Accept my congratulations! I will looking forward to your news about your experiences πŸ™‚ I’ m wishing you healthy baby. Take care πŸ™‚

  1. Congrats on your pregnancy!
    I too am PKU, however I was never told I couldn’t have children due to my PKU (thankfully), just that my diet would have to be very strict and I would have to do almost daily bloods to ensure my levels are right.
    I look forward to hearing about your journey into a new exciting part of life!
    All the best,

  2. Thank you for writing this, Elisa! When you announced your pregnancy (congrats!), I wanted to ask you about how you’re managing, but I couldn’t think of a non-awkward way to do so. Would you mind if I shared this with my classmates?

    P.S. I recently found out that I carry the most common PKU mutation.

  3. Jenna,
    Totally! I am happy for anyone to read my blog.
    Wow only yesterday I was reading that lots of people carry mutations… I don’t know exactly what that means, but cool!

  4. Congratulations! my son is 11 and has PKU…..he is doing wonderful and has a high tolerance to the Phe. I am very happy to know that you have a positive outlook on knowing that it is a 50/50 chance your child has Pku, I didn’t know I was a carrier and neither did his father and we are both only half caucasian. I am glad you chose to share your story. Thank you!

  5. Congrats! I also have PKU and im currently expecting my second child in September- My daughter will be 5 years old in June- Good Luck!!

  6. Hi I’m 20 and have pku I’m 7 months preg next wed and on 14 exchanges a day how many r u on I’m really worried tho

  7. Hi Jade, thanks for checking out my blog! Congrats on your pregnancy. You’re almost there! I’m close too – due in the middle of June. So exchanges…I’m trying to remember what that means because that’s not a word my doctors use, although I know a lot of people use it. Does that mean you get 14 g of protein a day? So you’re worried about your pregnancy? (feel free to send me an email by the way if you want to chat more – I have been eating more protein than that – about 20 or more g a day. But it’s all about the blood levels. I’m not one to really count what I eat, I just have habits that seem to work for me. And during my pregnancy I’ve been getting my blood tested every week – and that has been the biggest thing to give me confidence about my pregnancy — because I know if my blood levels are good than my baby is ok.

    1. Hi I’m Brenda I’m 31 I’m not pregnet but I am very concerned ill never have the chance to be and stay strong on my diet. But its great tohear everyone’s story to know it could be possible someday. I am classical pku and only allowed 17 exchanges a day thats only 5g of protien in other words. Very very hard. if I end up with the right person I hope I will be as strong and successful as you. Thanks

      1. Brenda, that IS hard to be so limited. Good luck! All the practice staying on the diet now will help you when that day comes. I know lots of people like you on facebook. Have you met others with PKU?

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