Pregnancy and PKU

On this International Women’s Day, I would like to give the microphone, or rather the pencil, to a member of our social media community who wrote an article about her pregnancy experience while managing the difficulties of Phenylketonuria. We are both hopeful that this will inspire and confidence to many women and/or couples living with this condition. 🙂

I wish you an excellent International Women’s Day!

~T

***

After several years of marriage and common life, my spouse and I got to the point where it seemed to us that having children was the right time. I knew I could not get pregnant « by surprise ». I had to pay attention to my contraception and I had to prepare for this first pregnancy. I must admit, I had not followed the diet so strictly in recent years. I traced the doctor who had followed me since my birth and I called him to tell him about my project and he immediately agreed to follow me.

My husband and I went to meet the medical team and we had a discussion about how it was going to happen and we had DNA tests to see if my spouse was carrying the disease, and he was not. My children were going to be carriers given that I have the disease but would not have PKU. It was a relief though. Then, it took me several months to rehabilitate myself to the diet and especially to the famous formula… I persevered and reached my famous 3 months of stability, then I got pregnant quickly. What happiness and wave of emotions when I saw the little + on the test. Everything made sense.

Pregnancy and childbirth are normal. The only difference is the fetal cardiac ultrasound around 20 weeks. Since this is one of the main risks of malformations, it is suggested to do this medical examination. In my case, my phenylalanine levels were always between 160 and 300, which is excellent and therefore the risk is virtually non-existent. Simple precaution. Everything was beautiful!

As the pregnancy progresses, the baby metabolizes phenylalanine for the mother. Which is great because you can add a dairy product or 2 to our diet. Wow! What happiness!

Then, finally comes the great moment… The one where this little being is laid down on our belly. A moment of grace where one falls in love instantly. The moment when we think that going back to such a strict diet has been so worth it…

So much so that I repeated the experience a second time. And this time it was easier. I discovered almond milk, yogurts and coconut milk… I could find natural products low in protein to make good recipes. Fabulous smoothies to which I added the formula. Snacks to calm nausea from early pregnancy. In short, this pregnancy was different, but went well. I was confident. Then I fell in love a second time.

Mom of two boys aged 4 and 6 years, I am also PKU. I did not take the diet strictly after my pregnancies because my phenylanaline levels are satisfactory, but I still monitor my amount of protein. It’s an everyday fight to be in my shoes. I would not hesitate to repeat a strict diet to add a third treasure to our family!

And you, how was your relationship with pregnant phenylketonuria?

~F

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