PKU and pregnancy - a question from a follower
Hello, I couldn't find your ask button!
I am 18, I have PKU and I am overweight, but that's not what I'm hear to ask,
I am not planning to have children any time soon, but if I ever was or thinking about it, I'm really worried how PKU will affect the time I'm pregnant or the child, can you tell me something about your experience?
Thanks,
Clair!
Hi Clair :) I totally understand where you're coming from being worried about PKU and pregnancy, even if it isn't something that is in your immediate future. Heck, I was terrified! Before I decided I wanted to have kids my dietary control was appalling and I honestly didn't think that I would ever have kids because I didn't think I would cope with the diet. But you know what? Once you make that decision to go onto the preconception diet it's like someone has flicked a switch. I got my levels down to pregnancy range within two weeks even though it meant I had to cut my phe intake by more than half (more like two thirds!). It helps to have great support from your clinic but you know what? You can still do it even if they're not great. My clinic wasn't great and my daughter is 100% fine because even though I didn't get the help I needed I managed. Once you're ready you'll be able to do it. My levels weren't perfect the whole way through my pregnancy. They shot up between 8 and 12 weeks because I wasn't eating enough because I had morning sickness and then at the end they went up again for no apparent reason. It's less of a concern at the end, or so my current consultant has told me.
Sometimes being pregnant with PKU can be hard. You HAVE to eat even when you're sick, if you throw up your formula you have to re-take it. You start out on very little phe intake (sometimes you can't have any phe for a little while!) and you can't give into your cravings. I struggled with cravings - I wanted everything I couldn't have - even stuff I have never tried or had tried and didn't like. I wanted meaty pizzas, beef and stuff like that and of course I couldn't - and didnt - touch them. You do what you have to even when you feel like it sucks.
My daughter is 100% fine. She was born premature at 34 weeks and spent a month or so in hospital, but that was nothing to do with PKU. She had heart scans and brain scans to make sure. Even though I did have some trouble with my levels she's spot on and even ahead for development despite her prematurity. She's just small. She was born very small and I don't know if that is because of the PKU or something else, though I have heard PKU women do have a tendency to birth babies on the smaller side. Miss E was somewhere between 2.5lbs and 3lbs when she was born. With that said, I know of PKUers who have had 9lb babies!
If you are on Facebook there is a lot of support out there. There is a great group called PKU Friendly (you have to ask to join I think) and lots of the women on there have PKU and have healthy, happy children. There are lots of pregnant PKUers at the moment too, including one lovely lady who has just found out she is expecting twins! I don't know anyone who has had their children within the last 10 years whose children aren't 100% perfectly normal and happy. It's scary, but when you want something so badly it's surprisingly easy! When the time comes you'll be fine :) My one bit of advice is this: Try not to be too overweight before you fall pregnant (when the time comes of course!). I was already overweight when I fell pregnant, but a key part of keeping levels low and stable is having a very high calorie intake. I gained a huge amount of weight during my pregnancy and I'm struggling to lose it. I thought we would start trying and I would have time to lose weight - I was losing weight slowly when I fell pregnant! To our surprise though we fell pregnant in the first month of trying and so I started out much heavier than I had wanted to. My pregnancy was very uncomfortable because of my weight and even though I'm desperate to have another baby I'm determined to get down to a healthier weight than I was last time. I do not want to go through the discomfort I experienced again if it is at all avoidable and I know without a shadow of doubt that my weight played a role in it.