It feels like yesterday that I snuck off to take a pregnancy test and saw that little pink line. It didn’t feel real at the time and it often doesn’t now (until I’m booted in the bladder). I still remember the look of shock on Steve’s face when I waved a pee stick at him at 9pm on a Tuesday evening. It all happened far quicker than we were expecting. We couldn’t be happier.
These days the thing that plays round and round in my head most often isn’t the first time we saw the flicker of a heartbeat on the screen at 9wks, nor the happiness on our families faces when we told them the news. It’s the apologetic look on the consultant’s face as he prepared to break the news to us that there was a major issue.
The world felt like it had stopped turning. I could hear the blood rushing around my body, feel Steve tense beside me and hear his breathing speed up as we tried to digest what was being said.
Our baby was poorly.
Our stubborn little sprout who wouldn’t stay still for scans, tested his strength at 7am by using my bladder as a punch bag and who was, even as we were being referred to a specialist hospital to find out exactly what was wrong, kicking me and making sure I knew he was there.
I don’t remember much about the conversation. I remember crying. The midwife not being allowed to comfort us because of covid. The consultant looking like he wished he could take it all back. The leaflets, information and next steps all being given to us. It’s one big blur.
Steve and I have usually been on the same page about most things (except perhaps the number of pets we should own and whether Mean Girls is a classic film) and this was the same. No invasive tests until we knew more. Meeting our baby was the most important thing for us and giving him the best chance at a good life was our priority.
The following few days were mainly trying to stay busy while we waited for the next appointment to come through. It’s all done within three days of the previous one but waiting for that call is suffocating. Telling our families there was a problem, the friends who knew we’d been for the extra scans asking how they’d gone. It was all like an out of body experience.
The doctor’s in Birmingham were amazing. It was a much easier experience in a way. We knew there was a major issue. The information leaflets we’d been given contained details of the few different conditions it could have been and our options so we had prepared and made our decisions about each one. I think we were both equally terrified they’d tell us we would lose our baby before birth and it became the unspoken shadow following us around.
I cannot describe how it feels to be given the option of termination while your baby is kicking inside you. To be told that you can choose to end your pregnancy because of the seriousness of your babies condition after the usual 22wk cut off. I will never judge any mother who makes that choice. They are strong women who are doing the right thing for their family and child. It just wasn’t the right choice for us.
Our other option was palliative care once baby was born. We’d have the chance of taking baby home or to a hospice and having the hours or days he was with us pain free and peaceful. I’m in awe of the strength of parents who make that choice.
We have opted for the third route; surgery. Three operations, starting at a few days old and ending when he’s 3-5yrs, to change the way his heart works. It isn’t a cure, this is incurable. This will allow him to live a normal life with half a heart until a time when he is old enough and strong enough to have a full transplant. No one knows when that will be or when he will need it. All we know is that is part of his future.
It’s an uncertain journey ahead. One we never expected to take. It’s hard to not think “why us, why him” when we see so many healthy babies and pregnancies running alongside ours. The reality is that we are facing a different introduction to parenthood to a lot of people. 8 babies a day are diagnosed with a chronic heart condition, 4 of those babies will die each week. We are doing what we can to give our boy the best life and the best chance at a future and, despite it all, we are so excited to finally meet him.
Our HRHS Journey 