For this first blog, I am just focusing on my pregnancy, and will go into my birth story and how my condition affects me being a mother in my next blog.
We both agreed, that we would have one child, one day. Because my muscle disease is so rare, the information on passing the disease down to my children is pretty cloudy. I wanted to have an official diagnosis and treatment before even considering having a baby. Plus – we were both young. I was only 22 and Dan 27.
I am very much a daddy’s girl, and despite being 22 I’m pretty sure my dad still thought of me as 10. I was always so careful to never get pregnant young in fear it would disappoint him. But, it seemed someone had other plans for me, because in August 2016, we discovered I was about 5 weeks pregnant.
We were both petrified, especially me, as I still felt so young. Deep down though, we were quite excited, as thankfully despite being younger, we were in a good position financially, with full time jobs and already owning our first home.
Unfortunately, our excitement was short lived. I started bleeding a day or two after my positive pregnancy test. We attended our Early Pregnancy Unit, where my blood was taken twice over two days to see if hCG hormone level was multiplying, as it was too early in my pregnancy to do a scan. It wasn’t multiplying.
The level had climbed slightly, but not enough for the nurses to think it was a viable pregnancy. We were sent home to grieve for our tiny little blob that didn’t even get the chance have a heartbeat. It was the hardest day of my life.
Jump forward four weeks, and the nightmare seemed to be behind us. I took it especially hard however, and blamed my defective body for miscarrying the baby.
We only told my mum, Dan’s mum and dad, and my boss about the miscarriage. I accepted I would never have a baby, because I believed my body couldn’t handle a pregnancy, and mentally I could not go through all that again.
However, that morning, four weeks after the toughest time of my life, I was sick as soon as I woke up. I felt absolutely rotten. It wasn’t until later that day, a wild thought crossed my mind, that I could still be pregnant.
Without being too graphic, I bled too much with the miscarriage to believe I could still be pregnant, and my hCG levels didn’t climb enough. Regardless, I did a test, and within seconds, it was a strong positive. I would have loved to see the look on my face. My stomach was in my mouth.
How do I explain this to Dan? I was told just a month ago I was NOT pregnant, and now I am? I phoned my local hospital and booked in for a scan, and told Dan that evening. He was as bewildered as me. But the same look of excitement from the first time was still subtly written on his face.
“You’re about 9 weeks pregnant, so you’ll have to come back in 3 weeks’ time for another scan,” the sonographer said, smiling. “How?! I had a miscarriage 4 weeks ago!”
To cut a long story short, we now think I was pregnant with twins, and sadly lost one very early on, at 5 weeks pregnant. According to the midwives, this is really the only way to explain it.
I can safely say I had never felt so much happiness and sadness all at the same time. Still to this day, I am so happy and lucky that I have a beautiful baby boy, but I still do think of the ‘what ifs’.
My pregnancy was not text book. I had appointments almost every week due to my condition, and a C section planned straight away. I was told I would deliver the baby 2 weeks early to ensure I didn’t go into natural labour. Doctors believed my muscle weakness would just not allow me to have the baby naturally, much to my disappointment.
At 10 weeks pregnant, just one week after finding out I was still pregnant, I was admitted to hospital by my GP with Hyperemesis Gravidarum, also known as acute morning sickness. More like all day sickness.
I lost 10 pound in body weight and was so dehydrated when the doctor tested my pee that I was sent straight to the hospital from my GP surgery for fluids. It was hell feeling so rough all the time. This thankfully subsided at about 25 weeks.
Surprisingly, apart from feeling very weak with my muscles, carrying around the extra weight of my baby, my pregnancy began to feel straight forward. At our 20 week scan we found as we were having a very healthy little boy, we argued on names, picked out nursery furniture and paint colours, and I started to genuinely enjoy being pregnant.
Unfortunately, this was short lived. At 32 weeks I started itching. The palms of my hands and the soles of my feet felt like they were on fire.
The next day, I attended hospital because the pain from itching was unbearable. After a very quick blood test, I was diagnosed with Intrahepatic cholestasis of pregnancy (ICP).
Also known as obstetric cholestasis (OC), ICP is a liver disorder that can develop during pregnancy. It is uncommon, affecting 1 in 140 pregnant women (0.7%).
Although the itching can be very uncomfortable and it can be frightening to be diagnosed, most women who have ICP have a healthy baby.
However, my consultant advised that having my baby at 37 weeks would be wisest, as the risk for stillbirth does slightly increase after this time with ICP.
A million thoughts flooded my mind. Would the baby be ready at 37 weeks? Would he weigh enough? Will he be ok in there until then? Can I cope with another 5 weeks of itching?
Fear completely took over. The midwives were absolutely incredible – they were so reassuring, comforting and positive despite all the problems I seemed to be having. I can’t thank them enough for the multiple times they calmed me down when I got myself into a flap.
The last five weeks dragged with all the worrying and itching, but I decided to start my maternity leave from work a week earlier than planned so I could try and relax. I kept myself busy sorting out the baby’s nursery, packing my hospital bags, washing all his tiny baby grows.
Now, almost ten months on, that tiny five weeks feels like a lifetime ago!
Big thanks to Erin for sharing her pregnancy story… check back in the next few week to read Erin’s birth story!
If you’ve been affected by miscarriage, please visit The Miscarriage Association for more information and support. You can also call them on 01924 200799, Monday-Friday 9am-4pm.