Maternal PKU Series: Jessica
If you've been following my blog for awhile, you've been made aware of the hardships that come with having a metabolic disease, getting treatment, financial issues, social situations, learning disabilities and more.
However, there is one element of PKU that not a lot of people know about, even those that have been around people with PKU for a long time, and that is Maternal PKU.
This is such a big and different beast that not even I know much about because I have never been pregnant, but I think it's so important for people to know what people with PKU have to go through just to have a child.
Because I can't speak to this, and I myself want to know more as I approach this stage of life, a few people in the PKU community have graciously agreed to share their experience. Everyone has a different journey with maternal PKU, so I thought I would get a few different perspectives. Thus, the Maternal PKU Series was born!
First up is Jessica:
Name? Jessica Buchanan
Where are you from? New York (near Buffalo)
What’s your tolerance? Typically 350 mg or 7g of protein
Have you always been on diet? Yes and no. I’ve always taken my formula and never had anything like meat or anything. But when I’m not pregnant I do have cheat meals and I don’t track everything I eat. I typically eat the same breakfast and lunch and then change up dinner a bit. Right now my tolerance is higher because I’m nursing.
Can you explain that? Nursing doesn’t raise your blood levels it actually makes your tolerance higher, raising your intake needs.
What formula are you on? Lophlex (the orange powder packets)
Do you take any other medication for PKU like Kuvan or Palynziq? No
Can you explain in your own words what maternal PKU is? When you have PKU and you want to start a family, maternal PKU is the whole process that you have to go through to make that happen. It is planning, prepping, charting, blood draws, and sacrificing so that you can have that healthy, sweet little baby.
How far before conception did you have to start preparing to have kids? I started tracking about 2-3 months before we started trying (and with both kids we got pregnant right away).
What did that preparation look like? Making a daily food log, weekly blood draws, many trial and error attempts to get the perfect intake number. When we were prepping for our second baby was much harder to find the perfect intake due to nursing.
What was the hardest part about the preparation? It was definitely harder with my second. Between having a one year old who needed all my attention, trying to squeeze in time to plan, prep and track, and then having my intake needs change so frequently due to nursing it was a lot to juggle.
Was it easy to keep your levels down during pregnancy? Hard? Why? It was so easy to keep my levels down in pregnancy. It wasn’t a choice anymore, I had to keep my babies safe.
Tell us about your children! Do they have PKU? Nope. Neither of them have PKU.
What was the most nerve wracking part of your experience and how did you overcome it? The random high level that I had in both pregnancies (I think it was around 7). It was because I actually needed more phe and it made my level high. My dietician didn’t get it but my maternal fetal medicine specialist was so helpful. It made me so nervous but I was reassured by family and the millions of doctor visits/scans I had, that everything would be alright.
What foods did you crave if any during your pregnancy? Frosting, my formula, pickles (but I always love pickles 😂)
Do you have any advice for PKU people wanting to become moms? It’s worth it. It’s the hardest thing I have ever done and you have to put the effort in. But in the end the only thing I ever wanted to be in life was a mom. It was all worth it and I’d do it 100x over. 😊 Its also helpful to have someone to lean on who has done this before. My sister who also has PKU is pregnant now and she always says how much she appreciates all the ways I’ve been helping her along 😊