Thoughts on Down Syndrome, thoughts on Maisie in the womb

Miscarrying whilst trying for a second baby was a shock to me. It was something I had thought about in the early days of being pregnant with Tom but when it did happen to me I was utterly devastated. I might write about it in depth another time but this post is more about how I felt about our unborn baby when we discovered she would likely have Down Syndrome…the feelings I had towards her when she was in my womb and then the reality of loving and caring for her when she was born. I really wanted a third baby and luckily I got pregnant easily, yet I suffered concurrent miscarriages in trying to conceive Maisie. These took their toll both physically and emotionally and so I came to be at peace with having two amazing kids. However a few months after my last miscarriage I remember consciously thinking of one last roll of the dice.

Another blue line, the slow passing of each day turned into eight weeks and a scan was booked to check for a heart beat. A heart beat detected, congratulations offered, one happy relieved couple. The weeks trundled on slowly made worse by morning sickness but this did mean that baby was ok. The 12 week scan came as a big relief but I was still reluctant to tell family. The possibility of another miscarriage was always in my thoughts so from the outset this pregnancy was an anxious one. The big scan at 20weeks was when the hole in the heart was detected. I was on my own as partners weren’t allowed to be present due to Covid restrictions. Upon being told I remember thinking it was too good to be true, as if I was expecting something out of the ordinary. But it would be another few weeks before we would find out the true context of what the hole meant when we met our cardiologist Dr Franklin. The toughest part of this scan was that once again due to lockdown restrictions I was one of the many expectant mothers who received unexpected news alone, without the support of their partner present. Luckily I had called Caolan before I went in for the scan to tell him exactly where I was as when the cardiologist told me to ring my husband to bring him in, I couldn’t speak I was so distraught. Something terrible was wrong I was thinking, but in a flash Caolan was there beside me and we were informed that our baby would require open heart surgery before 6months old and that this particular hole (VSD) was linked with a Down Syndrome diagnosis. Our baby would have Down Syndrome. We took the news in. It all felt a little surreal. At this point Caolan said “but it’s not the end of the world is it?” and they all rushed to say no it wasn’t. Caolan does feel it was a bit of a doomsday scenario in the way the diagnosis’ were relayed but the nurse and two doctors present were very supportive and remained so throughout the duration of the pregnancy. And so a Harmony test was booked to confirm whether or not our baby would have Down Syndrome. Another 2 or 3 weeks would pass before we found out the results. I remember the weekend before I got the results, at a park I noticed a baby girl on a swing and another girl playing both with DS. The next day I saw a mother with her older daughter who had DS. I took these encounters as a sign of reassurance, that everything would be ok. The thing is, I was always conscious of the possibility of having a child with Down Syndrome and having a sense that it would be ok. But when I got the call confirming our baby would very likely be born with DS I was very upset. I cried in the days that followed, tears turned to acceptance but with that came a low level of anxiety, a feeling that stayed for the remainder of the pregnancy. 

I remember only feeling excited a couple of times as the weeks went on. One of them was finding out the sex of our baby, another girl and this helped me bond with her as I had felt disconnected to our baby throughout the pregnancy. A combination of thoughts of losing her in those early months, the scary prospect of caring for a baby with a hole in her heart and the worry of an uncertain future due to her Down Syndrome diagnosis. This brought on feelings of guilt but simultaneously I knew how lucky I was to be having another but it was the uncertainty of what lay ahead that got to me. 

Someone who did bond with Maisie in the womb was Tom. Upon tucking him into bed at night he would talk to the bump and put on different voices and we’d laugh about how the baby would think she’d have multiple brothers. We got to Christmas and a name was chosen. Tom said “what about Maisie?” and that was the name I had been thinking of! He picked it up from Jurassic World and I from a contestant on Strictly Come Dancing. It turned out that Maisie was also my mother in laws godmother. I enjoyed that last Christmas as a family of four and soaked up a long evening watching a favourite movie whilst wrapping presents on my own, imagining how crazy things would get in a months time. 

Thankfully Maisie put us out of of worry by deciding to make an early appearance three weeks before her due date. “She’s coming” I called up to Caolan that Monday morning early January. I wasn’t in any rush to go to the hospital so we took our time but once we got in I was having contractions quickly. I hadn’t envisaged having them in the car park but that was the reality for many women thanks to lockdown rules! Anyway a planned C Section went ahead just as it had with my first daughter and Maisie arrived at 18.20pm with Caolan by my side. I will admit that I had harboured a tiny bit of hope that our baby wouldn’t have Down Syndrome after all but the moment I locked eyes with her I knew. “This one’s a cutie” the nurse said before taking her to be observed in the same room. A quick bit of oxygen was administered as a precaution but then we got to hold our beautiful daughter. In that instant all the worry and fear we had both felt transformed to relief and joy. The kind of joy a new parent feels upon holding their baby after a safe delivery for the first time…how lucky we were. 

I look back at that time and wish I hadn’t felt so anxious but I suppose it was a process that we had to go through. The fear and the worry we experienced couldn’t be more different to the joy and gratitude we feel for having Maisie in our lives.