Being a mum with MS – Danielle's story

Danielle's journey to becoming a mum was paved with one challenge after another including endometriosis, severe symphysis pubis dysfunction and placenta previa which left her bedbound for months. But after all that, and two NICU rollercoasters to boot, she's more determined than ever to live life to the full.

After trying and failing to conceive, I was diagnosed with stage 4 endometriosis and told that despite being aged just 27 my ovarian reserve was worse than that of a 40-year-old woman. So, after numerous operations to remove ovarian cysts, which just came back months later, I found myself going down the IVF route.

After weeks of injections, scans and blood tests, the day finally came for the egg retrieval. I can remember waking up in the room and hearing the doctors come around to tell people how many eggs were retrieved: "18", "24", "14". As for me, I had harvested four but two embryos didn't survive the first night. So, all our hopes were counting on two little embryos!

After the gruelling two-week wait, I had a positive pregnancy test and a few weeks later I had a scan to show two healthy heartbeats. But then, at 10 weeks, I miscarried one of the twins. It was simply devastating, but I tried to remain positive for the little baby inside me.

At 20 weeks, I was diagnosed with severe symphysis pubis dysfunction (SPD) which left me mostly bedbound or needing a wheelchair to go any long distance. My job in the city was out of the question, so I had to work from my bed.

As if that wasn't enough, I had to spend the final six weeks of my pregnancy in bed on the hospital labour ward because my baby's placenta was almost totally covering my cervix, causing heavy bleeding. I was so scared about the risk of a placental abruption that I didn't really sleep for the entire time that I was there.

I ended up suffering ten major bleeds. I can’t describe how it felt to see over a litre of blood pouring out of me and not knowing if the baby we had been through so much to conceive was dead or alive. Each time, I was prepared for an emergency c-section and my husband would rush to the hospital. I would be monitored, receive a blood transfusion and put on a drip and nil by mouth. But each time, it was decided my baby's heartbeat was strong enough to wait it out. Those six weeks were one long nightmare.

Days turned to weeks, which turned to months and I saw so many women come onto the ward and leave with their babies, not knowing if I would ever get to hold my own baby. I just kept myself focused on doing whatever it took for me to become a mummy.

My beautiful Isabelle was born after an emergency c-section at 31 weeks. She was immediately whisked away to the NICU, so I had to wait a few hours to see her. When I did, my heart broke to see this tiny little 3lb 12oz baby face down in the incubator, hooked up to lots of tubes and machines, with massive cannulas in her tiny hands and feet, and a feeding tube down her nose. She was so delicate that all I could do was put my hand into the incubator and stroke her back. It was just as painful to be sent back to a ward full of mothers with their babies, while I had to leave mine behind.

The next morning, I finally got to hold her for the first time. It was a lengthy process with a nurse having to get her out of the incubator, disconnect and then reconnect all her wires. But it felt truly amazing to have her in my arms. One of the hardest parts of being in the neonatal unit was the fact that I could only hold my baby once or twice a day, as she had to spend most of the time in her incubator.

I spent every waking hour by Isabelle's side, changing nappies through the incubator holes (which wasn’t easy), expressing and pouring it drip by drip down her feeding tube.

Three days later I was told I couldn't stay in the hospital any more. Going home after such a long time but without my baby was horrific.

My heart stopped one morning when I went into the NICU and Isabelle wasn't in her usual spot. I couldn't breathe. My chest went tight. Luckily someone came and found me to let me know she had been "promoted" to Room 2! She was in a cot instead of an incubator, attached to fewer wires, and wearing clothes for the first time!

Isabelle unfortunately had terrible reflux and would vomit most of her milk, but I was determined to get her home. Feeds would take hours and she would then need to be held upright for about an hour afterwards to reduce the chance of her throwing up the precious milk. Once she had finished I would express for the next bottle and by then, it was time to start the process again.

Eventually after three weeks, Isabelle came home just in time for my 28th birthday. Waking up next to her on my birthday was the best present I could have ever imagined! And despite needing regular ophthalmology appointments to check her vision, she’s gone on to meet all of her milestones.

When Isabelle was one, we excitedly booked an appointment at the IVF clinic to try to give her a sibling. But two days before it was due to take place, I was diagnosed with Multiple Sclerosis. I was told that I wouldn't be able to have the additional drugs I had used to conceive Isabelle and that combined with having a chronic illness meant our chances of it working were slim to none.

Miraculously a few weeks later I got pregnant naturally, against all the odds! Our second daughter, Amelie was born at 33 weeks after another emergency section. Our second time in neonatal care was a lot easier since we had plenty of experience. 10 days later Amelie came home, much to our delight.

After Amelie was born, I was put on a daily injection called Copaxone for my MS which thankfully has kept me relatively relapse free. I have had to learn to pace myself and reduce my working days to three days a week. But while I do get extreme fatigue, migraines and what I call 'buzzy feet', I manage to live a very full life and have never let my MS stop me doing anything I want to do.

Isabelle and Amelie are now fun, cheeky and creative seven- and five-year olds with a love of fancy dress, dancing and crafts. The whole experience has made me stronger as I know if I can live through that I can get though anything, and it has also taught me to live life to its fullest!