A Prader-Willi Pregnancy

It seems strange to think back to my pregnancy and associate it to a time of distress when my little girl, Serenity, is happily rolling around on the floor.

Pregnancy is a different time for each individual and the best advice I could ever give a Pregnant Women is to not take anyone’s advice. Not your parents, siblings, your friend, people from the internet, including me. Each experience is completely different.

My pregnancy wasn’t a good time, I was exited about becoming a mom and having my own little family but I couldn’t understand why my pregnancy seemed so different;

I never had a ‘glow,’ in fact I felt ill most of the time.

I found out I was pregnant just shortly after quitting my job due to stress, I was nervous but I was so happy and grateful, this is my first pregnancy and my first child. I didn’t realise how many risks there were in trying to grow a baby, as it was my first one and I have always been around ‘healthy’ pregnancies.

I had my first scan and my first appointments with the hospital which all went fine, I had awful sickness all through out the day and my anxiety levels were through the roof. I was so emotional and had un-triggered Panic Attacks regularly which would make me almost faint once they finished. Prior to being pregnant, I was never this anxious and I never had panic attacks.

I had a private gender scan at 16 weeks as me and my partner couldn’t wait to find out the gender. I always thought I was having a little boy, until I had a dream I was at a family event holding a little girl. We didn’t find out at that scan, I used up all my allotted time and the Nurse could not give us an answer due to our babies position so we was rebooked a week later. When we went back they still couldn’t tell us after a while, they made me drink loads and exercise to change the position of the baby, Eventually, we were elated when they said we were having a girl.

A few weeks later I had my 20 week scan at the hospital, again, they said they cant do their measurements due to our little girls position, so again a week or two later I was rebooked.

I noticed before the second 20 week scan, our daughters movements were so strong, I could see big movements and they felt so big and painful. I wasn’t ‘showing’ much but I noticed I had looked smaller than a few days ago…

I will never forget the second 20 week scan. The hospital said that it was good I had to come back as I had lost all the fluid around the foetus. I had no idea. They explained how this usually happens through smoking, drinking, and taking drugs – I don’t do any of those things. They also said it was due to infections or a possible abnormality. I received the usual tests for common conditions and the odds were very low. I also received testing for a range of infections, all which I was negative for, they couldn’t do any Amniotic fluid tests as there wasn’t enough there and there was a risk of damaging the foetus and Miscarriage. I saw the consultant a week after as my pregnancy needed to be closely monitored. It was the worst experience. The scan picture I will never forget it didn’t even look like a baby, and I could even see for myself there was no fluid without being a medical professional. My little girl had stopped growing for a few weeks and she wasn’t in a safe environment to grow in. I felt so ashamed and guilty as I thought the one thing I’m genetically made for is to grow a baby and I couldn’t even do that. I was prescribed Aspirin and put on bed rest to help with the blood flow but I was told that I could either give birth at any minute from around 22 weeks but most likely that this pregnancy was probably not going to happen for us.

The following few weeks I was at the hospital once a week being scanned by my consultant. This was during Covid-19 where you wasn’t allowed your partner in appointments with you, however I was. I was scanned every week and the situation never got worse, all the consultants were very cautious with me and my baby. Eventually I had a low, but healthy amount of fluid around our little girl and she had also started to grow again. Fantastic, however I still never felt her move.

From about 27 weeks I had to have ECG’S done on the babies heart rate. Her heart rate kept dropping low and she was still so small. I had to have ECG’s done every other day except weekends until my daughter was born. I was also working full time still. Looking back, I don’t know how I did it. My memories are very vague and I just think my body went into survival mode. My little girls heart rate dropped quite often so I would be at the appointments for hours. A few times they couldn’t find the heart rate so I had to see other nurses. At this point I never felt her move, I only ever felt her hiccup – another reason I needed to be monitored so closely. A few times her heart rate dropped below 70 and I was prepared for labour at around 27 weeks.

I was sent to a delivery room, given some injections to mature her lungs and brain as she was going to be born early. Once our daughters heart rate came back up, they decided not to deliver as she was just so small. Everything the hospital decided was such a risk.

I never had a birth plan. My family would ask what mine was, and I always heard about a birth plan from books or TV. Honestly I thought it was an American thing because it was never discussed with me, it felt like no one knew what they wanted to do with me. I learned from my sister it was an actual real thing in the UK and that I ‘should’ have one. I felt so different in this pregnancy.

After weeks of non stop scans, appointments and ECG’s I was booked in for a C section at 37 weeks. I was booked in earlier but they kept pushing it to get some more growth out of her. The hospital changed my plan last minute and told me I had to give birth naturally, I put my trust in them even though I knew the risks and persisted. I was induced and after 3 days of induced labour, nothing happened. My babies heart rate kept dropping and no one was doing anything about it, after I fought back I finally signed the forms for a C-section. They still tried to talk me out of it but I knew deep down with her heart rate so low, and so tiny she wouldn’t make a natural birth. They told me I would have to wait another day, but about 10 minutes later they called for me as an emergency, they must have seen her heart rate.

Its difficult to put trust into other people for something so life changing, but I think its good to have a balance of trust in medical professionals and our own intuition. We know our bodies so well its magical, therefore we must always go with our gut.


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