BABY DIARIES 7 – A Rainbow Heart Baby

Photo by Zoe Morley Photography

So we’re having a rainbow heart baby. I’ve since learnt they call children born with congenital heart problems are referred to as “heart babies”.

When I left you last we’d just found out what was wrong. The specialist went on to explain that I would now need to deliver him at Westmead Hospital so that as soon as he was born a Neonatal cardiac team could take over and transfer him to the Children’s Hospital for stabilisation. Soon after open heart surgery to perform an Arterial Switch – basically swap the pipes over. Sounds simple enough. Of course it isn’t quite that simple, it’s a major surgery and while swapping over the two major arteries is one thing, the much smaller coronary arteries need to be swapped as well. A newborns coronary arteries are about 2mm each. It’s amazing what can be done these days!

She didn’t go into too much detail about the condition as she was then going to refer me to see Dr Gary Scholler at The Heart Centre for Children who is a Paediatric Cardiologist for further analysis. He would be he one to explain to me in more detail the surgery and any possible complications. But she did recommend that I have an Amniocentesis (Amnio) the following morning. An amnio involves putting a needle and small tube into the uterus and extracting some of the amniotic fluid around the baby. The babies DNA is floating around in that fluid so they are able to do a full genetic screen to check each chromosome to make sure there aren’t any other syndrome type problems. I’d already had the Harmony test at 10wks so I knew I’d been tested for some, but this would test for all. She’d explained that TGA was not specifically linked to any of issues, or genetic factors, his condition was simply bad luck but it would be good to know if there was anything else going on.

She also explained the miscarriage risk of the procedure to me. She said the chances of that happening were very small. Only 1 in 200 or so. That wasn’t making me feel much better given that we’d just been told what our son has is something like 1 in 10,000. She strongly suggested I have it, so what could I say? I was going to have to take the risk.

I spent that evening trying to resist the urge to google everything under the sun. She’d specifically told me not to google the condition but instead given me some reliable resources to do some more reading about the condition. I also looked into the whole Amnio process so I’d know what to expect in the morning. Basically it sounded like they’d numb my stomach and while doing an ultrasound they’d find where the baby was and then stick the big needle into a spot that wouldn’t mean sticking it into the baby at the same time.

We arrived in the morning and it all happened pretty quickly. They prepped my tummy with disinfectant, but there was no numbing cream to be seen. I was just going to have to take it straight up. I obviously couldn’t move at all while this process was happening so I just stared at the ultrasound screen and tried to put myself mentally elsewhere to deal with the pain of the needle going in. I didn’t watch the needle go in, I just saw it punch through my uterus on the screen and towards the baby. Scary! The baby then of course started moving around but the needle had been pulled back a little by that point, just leaving in a tube. It was at this point I had a look at what was going on in the room and they were pumping out giant syringes of fluid. I think they took about 4 of them. It seemed like a lot. Even the nurse who was assisting was saying to the specialist “We’ve got enough”, but she took another on after that which didn’t thrill me. But again, I’m not a Dr so I just let them do their job.

They pulled out the needle and tube, patched me up and then I was taken into another room and given a form with some info on what would happen if the procedure did result in a miscarriage which would probably happen in the next 24-48hrs if it was going to happen. The fluid that they’d taken should be replaced within 24hrs so I shouldn’t worry about that. The test results would come back in 2 parts – the first part would only take a few days (but that was essentially the same test that I’d already had at 10wks and knew was clear) and the full results could take up to 2 weeks. 2 weeks! I was also told that I “still had options” at this stage if any issues were to present themselves from those results. Basically, I could terminate the pregnancy on medical grounds if I wanted to or if it was advised by the medical team. Again, something I wasn’t expecting to have to face the possibility of.

So I went home to rest and try to process what had happened in the last 24hrs. Our baby had a rare heart condition that could be fixed and shouldn’t effect his quality of life at all in the long run. Ok, that’s a lot but I can deal with that. Waiting up to 2 weeks for test results that would tell me if our baby had any chromosonal issues, and then if he did, having to potentially face ending the pregnancy was too much. I was petrified. Before we decided to start trying for a baby we’d spoken about what we would do if there were major issues but I wasn’t at the start of my pregnancy. I was half way, over half way by the time the results were due back. By this stage, the baby is very much a baby. How could I possibly make that decision if something was wrong. I was weighing heavily on me.

A few days went by and I hadn’t had any issues from the Amnio so it looked like I was out of the woods as far as a miscarriage from the procedure went. We were due to see the Fetal Cardiologist at Westmead the next week. Now we wait….

NEXT CHAPTER: Amnio results & the Heart Centre For Children

Ash =)