Pregnancy worries & Maternal PKU

I was planning to try and start a family next month but I’m not just any type of woman because I’m a rarity, lol. You see I have a rare metabolic condition known as Phenylketonuria (PKU) for short. Phenylalanine is a building block of proteins which is an amino acid. My body lacks the enzyme to break down that protein which results me in having to eat a very, low strict diet - that means no seafood, no chicken or meats, no wheat, no grains, no dairy BASICALLY ANYTHING HIGH IN PROTEIN which comes out to almost everything, lol. They test every newborn baby for this at birth by the prick of a heel. I happened to test positive with this as well as my twin sister(I wasn’t alone in this) and my mother had a heavy financial road ahead of her.

Maternal PKU woman can’t just go trying for a baby without having to worry of her phe levels are within range which a safe range is between 2-6. 2-6!!...... My levels have been in the upper teens more towards 20 for the longest time now. I have to work extremely hard to get the womb ready and prepared. It is said that women with PKU and uncontrolled phenylalanine levels have an increased risk of pregnancy loss. I couldn’t fathom conceiving a baby and then having to go through that loss and I’ve been though plenty of loss in my life; one of which six years ago June 1st I lost my best friend and what I would consider the perfect man; my fiancé. It was the hardest day of my life.

I have all of these worries and concerns like am I going to be able to keep my medical formula down. Oh yeah, my medical formula is something I need and as if 24 ounces wasn’t enough that’ll also go up in how much I need to consume everyday(it helps keep my phenylalanine levels in range. Being sick/vomiting also raises the blood levels and that stinks because when I’m nauseated I tend to like throwing up as it helps relieve the nausea I am experiencing. Maternal PKU is not your average pregnancy. My sister did it 3 times and had 3 kids. Unfortunately she did not have her phenylalanine levels within in range before conceiving and yes they do have issues from it. It is very important that our levels are in range and we do a pre-conception diet to obtain those levels. I am planning to do that but right now, the plans are to get married and then start the pre-conception diet. Covid-19 put a big damper on a lot of plans but I know I am not the only one going through everything being flipped upside due to Covid-19.

I wish I didn’t have to think so hard about something that is supposed to be so enjoyable. Maybe I’m just thinking too hard about all of this.