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Home > VITAFRIENDSPKU > BLOGS > Preconception: Let the journey begin!

Preconception: Let the journey begin!


For most people when they want to try and have a baby, they just get right to it. But for people with Phenylketonuria (PKU), it requires much more planning and organisation. I didn’t just say “Let’s try for a baby”, I said to my husband, “Let’s start the process of having a baby. I’ll call my dietitian tomorrow.” Not your normal beginning, but one that is necessary to safely have a child when you have PKU.

For most of my life, I had heard about this complex sounding process you needed to undertake in order to have a baby that was free from complications due to your PKU. I thought I was now ready to start this journey as I assumed it would take a while. From talking to girlfriends who also have PKU it seemed to be a 6 month process with 3 phases, tightening up your diet so to get your phenylalanine (phe) levels in the normal range for pregnancy, maintaining this and finetuning to keep phe levels consistently in this normal range and then your metabolic team gives the “green light”, actually trying to become pregnant & still keeping your phe levels in the normal range.

Getting your levels down:

Every fortnight I needed to check my phe levels and the best way for me to do this was to go to the local pathology to get my blood taken. Whilst it wasn’t necessary to have a proper blood test every week, I found I got my results back quicker so I could then make diet changes quicker. I could have done my finger pricks and sent it that way but for my first pregnancy I didn’t like it. My second pregnancy I felt more confident in myself and did use the newborn screening cards and sent them via express post so to speed things up.

My usual daily intake was 10 grams of protein and my levels where usually about 400. I needed to tighten up my diet and reduce my total protein so to reduce my levels further. Clare, my dietitian was super helpful. I had to get my levels below 250 and maintain that for three months. The first change which we implemented was going down to 6 grams of protein. To do this I increased my reliance on PKU low protein products such as low protein flour to make vegie patties and low protein pasta. I found eating the same or similar foods every day helped me be consistent in my protein intake and my calorie intake. This helped to get my levels down but not quite enough. This went on for weeks and I found this very frustrating. I was trying super hard and couldn’t understand why my level wasn’t going below 300.

Examples of my LOW PROTEIN MEALS

PKU Bread: 0g of protein.
PKU Pakora/vegetables: 0g/1g of protein.
PKU Vegetable patty/chips: 0/2g of protein.

And getting those levels down some more:

With further discussion and help from my dietitian the next change was switching my protein substitute from a GMP product that contained phe to one that didn’t. I couldn’t believe that just a simple change in formula helped to get my levels lower…. but it was still not low enough! I was around the 250 – 280 mark. I was so so close, but it still wasn’t enough. I did learn an important lesson though. If you want to like your medicine/protein supplement and want to enjoy it badly enough, any taste will be good. This medicine was something I could not stand when I was younger but with mind over matter and perseverance, I enjoyed the taste and what it could mean for me.

The final change I made was increasing my protein substitute, so now going up to five PKU pouches a day. At first, I could not stand the thought of having to drink another medicine in my day, but it helped so much. My levels finally got below 250 and I just had to keep it that way. The first level below 250 was the one of the most exciting and terrifying moments I had experienced. I was so excited because I had finally made it to the goal but terrified that one wrong week, I would undo all the hard work. Three months was a long time, but I knew what I needed to do. One week my phe levels did spike but that was when I was sick so I could not do anything about that, thankfully my metabolic team were very understanding.

Keeping the levels low and my support team:

So I did manage to get my levels to consistently be under 250. Well it’s certainly easier said than done! I feel the only way this was all possible was because I had an amazing husband, metabolic team and group of friends. I couldn’t have got through the days of wanting to eat more than 6 grams of protein without them. My husband was my greatest support. He made sure I had my medicine/protein supplement when I felt tired, cooked meals when I did not want to, and he was my support for all the heartache that went with this process. He was my rock and I couldn’t have done it without him. My metabolic team were also incredible. Clare rang me when she got each level back, provided me with tips and helped me when I was getting frustrated with the process. The final group which helped me was my friends. They looked out for me and made sure that every gathering we had, there was something I could eat. My best advice to anyone on this journey is to have a support system you can rely on because there will be days you get frustrated, there will be days you want to quit and there will be days where you fail at sticking to your limited protein intake. But, with the right support you will make it through the journey and get to the moment of seeing the line on the stick.

My life was a super strict low protein diet, consistent protein supplement, fortnightly bloods levels and trying to then actually become pregnant. They felt like long weeks and months. I had many weeks of frustration, often became angry and annoyed at how difficult I found it was. I felt super sensitive to other friends around me that seemed to get pregnant so easily. I needed to stay focused, positive and motivated. Finally came the day…..the day I longed for, to actually see that blue line on the stick and be pregnant. I was excited, anxious and scared all at the same time. And so the next phase begins…..and that is a story for the next blog! 😊

Explorers Club

If you haven’t done so already, why not browse our Vitafriends Explorers Club – an education programme for families managing PKU in the early years.