Living with PKU

A Pregnancy Story

My experience with maternal PKU and some thoughts on motherhood

Sometimes it takes someone asking questions to get your thoughts out. Well, Amanda Cosburn has been asking for stories. I sent her mine and she asked for more details on my pregnancy. This is my answer. It’s not necessarily very organized, it’s just a collection of details about dealing with PKU while being pregnant as well as some of my feelings during the whole process. Enjoy!

I’ll be honest with you. When my husband and I decided it was the right time for us to have a baby, PKU wasn’t even a concern. Now, I had always been taught how serious the consequences of high blood levels would be on a fetus. I knew how important it would be to keep good blood levels before and during pregnancy. But because I always follow my diet and keep my levels well within the safe range, I wasn’t worried about this at all. Thus, we got pregnant without even consulting a PKU doctor and I didn’t have to do any pre-conception diet. Looking back, maybe I should have at least checked about pre-natal vitamins, but after asking my dietitians, it turns out I didn’t need to take any, even folic acid (really important), because there were plenty of all of the vitamins in my formula. I drink phenyl-free 2.

Like I say, this is my story and I realize this is different than a lot of people. I have since learned what a struggle it is for many women to follow a pre-conception diet and get their levels down to a safe range for pregnancy. This is why I am so passionate about life-long diet. If you always stay on diet, you don’t have to change anything to get pregnant, and it’s a lot less stressful. Deciding to have a child and trying to get pregnant can be stressful enough! So that’s my perspective. Although maybe if my diet was more strict (I seem to have a relatively more mild case of PKU) it would be harder for me to stay on all the time.

Well I remember when we got a positive result being excited and also thinking, ‘we’re so young!’ I actually think we’re a decent age, but it just hits you what a huge responsibility it is. You will never “be ready” to have a child. You just have to more forward on faith.  Also, for several months it didn’t feel real to me that I was having a baby. I felt guilty about that. But I gradually realized it is hard to imagine something you’ve never done before and that’s ok! I had no idea what to expect until she was in my arms. How could I have known?

So maybe I should have got in touch with a PKU doctor before getting pregnant. But I didn’t, and it turned out fine. My levels were great. I had to get them checked once a week. I was able to do a finger prick at home and mail it in. I saw my PKU doctor only once a trimester, so that was pretty manageable. The dietitians would call me every week though about my levels and to answer any questions I had, so that was helpful.

My levels were a little higher than normal – over 3, so I had to me more careful during the first trimester.  This is common because the levels are magnified in the fetus so it’s really important to keep them pretty low. In general I was more strict with myself during the first trimester – not eating as much rice or potatoes as I normally would – trying to eat more low-protein pasta.

To answer your question – I eat low-protein pasta very often. I use it for spaghetti, pasta salad, and a weird dish I love of pasta, peas and corn and Catalina dressing. I don’t use very many other low-protein foods though. This all stayed pretty much the same during my pregnancy.

I remember going to a Thai restaurant with my family during the first trimester and having my dietitian look at the menu ahead of time. This was a lot more hassle than I would normally take going to a restaurant. I normally just eat vegan and call it good. But I had to really limit myself. There were five courses at this restaurant and I remember having to pick and choose which ones I would eat – I couldn’t have all of them. It was hard, but my husband was really supportive (he picked a bunch of egg out of my pad thai for me), and I felt that I was making a sacrifice for a really good reason. It felt good.

I travelled to my grandma’s in a different state at this time. I forgot to bring low-protein pasta which was really dumb. I had to go to the store and buy gluten-free pasta. It wasn’t as good (maybe just because I’m not used to it).

The good news is, around second and third trimester my levels started dropping, meaning the baby needed more Phe, and I was able to eat more protein. By third trimester my levels were often low so I was told to eat more. This was so nice. I started eating normal ice cream on a regular basis, which I enjoyed. I still had low levels though (around 1) so I had a add milk to my formula. I kept having to add more and more because my levels were still low. By the end I was using I think 8 oz a day.

I had a pretty good pregnancy. I did have quite a bit of nausea during the first trimester. I didn’t throw up very often. I learned to eat immediately after waking up, sometimes even before getting out of bed. I learned to snack throughout the day to stave off nausea. I often felt pretty gross in the evening after dinner though. I was able to keep drinking my formula the whole time. One health professional told me that protein actually helps with nausea so the formula might have helped. I also found that I was more nauseous if I was bored.

It is also easier to get depressed if you’re bored. I learned to find a balance of being busy enough to not get depressed, but relaxed enough to not get overwhelmed. I found work as a substitute teacher which was good for this because it was whenever I wanted and therefore not fulltime.

8 Months Pregnant
8 Months Pregnant

I went on walks whenever I could manage it first trimester. Second trimester I felt great in general. I even did some jogging. But I mostly walked and I kept that up all the way through third trimester and the week of my delivery. It felt really good to exercise and helped me get out of the house- I often walked with friends and family, pregnant and not pregnant.

So yeah, overall I had a great experience and felt that PKU wasn’t a big concern. I have my baby now and she’s beautiful. I am definitely having more children. I always was planning on having a family some day, and I knew PKU wasn’t going to stop me. It’s hard to imagine having another one right now because having a newborn is pretty exhausting. But I know I want a relatively big family eventually – maybe five children?

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Baby Elena at 2 weeks old

Having a baby is an amazing experience. I am learning so much! Another thing that worried me during pregnancy is that I really didn’t know hardly anything about babies. I had experience with children, but babies? How do you learn that? Well, you have one. I mean I would recommend doing as much research as you can before the baby comes, but really there’s no way to fully prepare for such a life-changing event. It’s a huge learning curve. The biggest thing I’m learning is that you can’t be selfish. The minute you think, “this is crazy, I just fed you and you’re hungry again?!” you realize, ‘That’s not for me to decide. I am here to meet your needs.’ It’s a really humbling and refining experience.

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3 thoughts on “A Pregnancy Story

  1. Eggs is a key point for a woman to get pregnant, by means, it is hard for a woman without healthy and viable eggs to get pregnant. The quality of an age makes important role more than the quantity. The quality age will determine the viability of conception and pregnancy.

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