PKU Pregnancy {I Am Strong}

{by Laura}

For as long as I can remember I was was told I couldn’t have children, due to having phenylketonuria or PKU. This means my body cannot digest protein, allowing raw protein to go into my blood stream. I was told if I were to ever get pregnant I have a very large risk of having a miscarriage or having a baby with extreme mental and physical disabilities.

My entire life I was discouraged from ever having children.

When I was 20, my husband and I wanted to explore more into starting a family. My new doctor informed me that it was possible to have a healthy baby as long as I was very determined to do whatever it took to have a healthy baby.

I am strong because at the age of 22 I became pregnant despite being told my entire life not to.

I am strong because I started my pregnancy only being able to eat 12g of protein and having to get the rest through a medical beverage that made me sick.

I am strong because despite having fluctuating protein levels that worried my doctors and almost having to get a feeding tube placed in my stomach to be able to keep the protein in my blood down to a minimum…

I gave birth to a beautiful and more importantly extremely healthy baby girl on March 12, 2014.

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9 Comments

  • allie merner

    This is wonderful. I gave birth three days later to my daughter, Marigold. She was diagnosed 11 days later on March 26th with PKU. I will be saving this story to share with her one day.

  • LA Keyes

    Congratulations and thank you for posting this! My niece also has PKU and she’s been told the same thing you were told about having children. We will be sharing your story with her. She’s not ready for children yet, but if she ever decides she is, your experience provides hope. Thank you again and best wishes to you and your beautiful baby.

  • Elisa Skidmore

    Congratulations! This is such a happy story. I also have PKU and was able to give birth to a healthy wonderful girl who is now 16 months and the light and joy of my life. How is it going with your baby? Are you nursing? I’d love to stay in touch. And check out my blog. I talk about pregnancy, life, and share recipes.

  • Debbie Sheppard

    Welcome to the world if motherhood while having PKU… 14 years ago, this month I took the same journey. I have 2 boys ages 14 and 12, who are healthy, regular kids.. They know I have PKU, and its been a great way for them to learn genetics, and their friends have know learned all about it!! Got to say, I am the only mom of their friends who always has fries in the house! Ha ha, and congrats!!!

  • Nina

    Congratulation on your beautiful baby girl, she is gorgeous. I`m surprised to hear that the doctors told you that you can`t have kids. It is so outrages. Where do you live that the doctors don`t know how to deal with pregnant women with PKU? Women with PKU, as myself, are allowed to have children. Yes it cost us lots of sacrifices but at the end of the road it`s all worth it. I have 5 years old son and he is perfect. Good luck in a new chapter of your life. Enjoy motherhood, Kids grow so fast.

  • Madeleine

    Thank you so very much for this post!!! I am 22 and have cPKU with 10g per day. I have the same mentality- that I would do anything possible to have my own child and to protect their health. But I’ve never heard from anyone who has done it and has been successful. Thank you for sharing your strength and for sharing that it is possible!!

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