MY OTHER PROJECT • by Jo Williams
Whilst I never declared that I wanted to be “a mummy and a princess when I grow up” as my sister did, I always knew I wanted children. Skip ahead to the year of my 30th birthday and project baby was on. We’d made it onto the property ladder, got hitched, honeymooned in the lap of luxury and had lots of fun dancing and drinking the nights away at friends’ weddings, and we thought it might take around six months. But then my period came, and came again and again for many months after that. Most months I was convinced that I’d developed one pregnancy symptom or another. Every month I was proved wrong. I dread to think how much I spent on pregnancy and ovulation tests.
Eventually I stopped using them as I thought they were stressing me out, and you know how people love to say that stress stops conception. When friends made their pregnancy announcements I cried my eyes out in the shower so my husband wouldn’t hear, I was so ashamed that despite feeling delighted for them, I was devastated for us. We saw an NHS IVF consultant to discuss our ‘unexplained infertility’. In the January she tweaked my thyroid meds and told us to try for another six months before she would apply for funding.
In the April I had a spinal stroke which paralysed me below the belly button. I’d walked into A & E thinking the worst thing in my world was the fact that we weren’t getting pregnant, and I left spinal rehab nine months later with zero movement below the waist. Despite knowing that paralysed people can get pregnant and parent from a wheelchair, many of my tears during this tough time stemmed from thoughts like ‘I’ll never be able to take a child to the beach.’ And if I can’t manage my own bladder and bowel, how can I manage a baby’s?’
It took nearly a year in my wheelchair before we even thought about trying to get pregnant again. For most of that time I was focussed on getting back to work, physio, adapting our kitchen and bathroom to meet my new needs, and negotiating day to day activities from a wheelchair. When we returned to see the IVF doctor, she made plans for ordering the IVF meds and booking an egg retrieval procedure straight away. We were poised and ready to put our faith in science. Then, my period was late. On day three we bought a pregnancy test and my husband poured wee from my catheter bag onto it. He was the first to know. Not that we really believed it. A few days later I did another test. Positive again. I kept both of those positive pregnancy tests for longer than is strictly hygienic.
By the time our 12-week scan rolled around Covid measures were in full swing and it wasn’t clear if, as a wheelchair user, my husband would be able to accompany me to the scan, so we booked a private ultrasound we could both attend. We saw the baby on the screen and beamed at one another. Our little miracle. Something good that we surely deserved after the last couple of years. The sonographer burst that bubble, telling us that there was more fluid than expected under the skin at the back of baby’s neck and also around the abdomen. On her recommendation we called our NHS hospital. Due to my medical history we were under a specialist team already, and they arranged for us to go into the hospital for a repeat scan that afternoon. Hydrops fetalis (a condition that occurs when large amounts of fluid build-up in a baby's tissues and organs causing extreme swelling) was diagnosed and the consultant warned of potential miscarriage, saying that most people who do not miscarry, terminate as baby’s prospects are so poor. We arranged to return to the hospital over the next few weeks for a CVS to remove cells from the placenta for chromosome testing and fetal cardiology scans to rule out genetic and heart issues. Going through all of this during peak lockdown without being able to hug our mums or best friends was pretty bleak.
But we didn’t miscarry, neither test revealed anything bad, and by 16 weeks the hydrops had disappeared! My lockdown pregnancy continued, but we didn’t tell anyone the news beyond our nearest and dearest. Our 20-week growth scan confirmed that the hydrops had gone and that all was on track, however the accompanying fetal cardiology scan picked up two potential issues with our baby’s heart. We were assured that they were common heart issues and that operations to correct them were pretty straightforward. Compared to the hydrops diagnosis, we took this in our stride, told our friends and dared to hope.
Our son was born by elective C-section at 37.5 weeks. I burst into tears before the curtain had even been lowered – a build-up of so many emotions, the relief that he was finally here and a huge rush of love. After 10 days in neonatal intensive care he had an operation to correct the coarctation (narrowing) of his aorta. After a short recovery in hospital, he is now home with us, making us laugh everyday with his funny faces and growing well. The hope is that his other heart issue will repair itself as he grows, and hope is what we will continue to have for our special little boy.