Image sourced from the HEART CENTRE FOR CHILDREN Westmead website
We had our first visit with the Heart Centre at the Westmead Children’s Hospital. Sam and I were sitting in the waiting room which was MUCH nicer than the one we’d been in at RPA. Being a Children’s Hospital it was colourful and there were drawings and all sorts of things everywhere. If you know me, I’m not really one for kiddy stuff but I found the environment a lot more comforting and the staff were lovely. That was great news since I knew I’d probably be spending a lot of time there. While we were waiting I had my phone on silent in my bag and I just so happened to pull it out at the exact time a no number was calling me. It was pre-8am and I hate answering no numbers but I did and it was the full Amnio results – they were clear. I was so relieved. That monkey was off my back and now I could concentrate on the process of sorting out the heart.
We met Dr Scholler and he was lovely. He did another scan and then talked us through in more details what it was and what that meant for the babies arrival. I will deliver at Westmead where they will have a team of specialists and surgeons on hand to take over. Babies with heart problems, especially TGA, are often born very blue because they don’t have enough oxygen in their blood to make them pink essentially. All babies are born with a small hole between the two heart ventricles (Every heart has 2 sides – ventricles – and 4 chambers). Usually this whole closes up soon after birth. For our baby, he really needs that hole because it means the blue blood on one side, has a hole to mix in with the oxygenated red blood on the other. Because arteries aren’t doing that they are supposed to, the more mixing the better for him. At this stage we don’t know how big that hole will be and how much mixing will be happening at birth so one of two main things will happen. If he is born, and the hole is big enough and his oxygen levels are ok, they’ll give him a hormone to keep the hole open. It’s the same hormone he’s getting now in the womb like all babies. If the hole isn’t big enough and there isn’t enough mixing they’ll perform a balloon catheter procedure which involves putting a tube up into the heart, inflating a tiny balloon and essentially making the hole between the two sides bigger so that the blood can mix more. Once he is stable, maybe 5-7 days after birth they will perform full open heart surgery and do the Arterial Switch. Then he’ll be back to the Neonatal ICU to recover, then to the ward and then home. All going well we’re probably looking at 4-6wks in hospital but it’s hard to say.
Also because hearts are complicated and because we won’t know if there are any other small heart issues until later scans when he is bigger or even until he is born, there might be other things that need addressing but for now at least we know about the TGA and we can plan for it.
After meeting with Dr Scholler we also met with one of the NICU (Neonatal Intensive Care Unit) nurses for a quick chat. She was amazing and made me feel immediately at ease knowing that our little boy would be in the very best of hands with the team at Westmead when he arrives. The Dr also suggested we have a session with the Heart Centre Psychologist before the baby arrives just so we can meet them and should we need further support when we’re in the thick of it, we wouldn’t be meeting them for the first time then. We have that coming up just before Xmas the same day we see Dr Scholler again for a check up.
The change of hospitals has also meant a change of Obstetrician. We live about an hour and a half away from the Children’s Hospital so our current OB def doesn’t deliver there. He referred us to an OB who does and who also has a lot of experience with children being born with complications. We’ve had one appointment with him so far and we really like him so we’re in great hands.
If you’re super interested in knowing a bit more about Transposition of the Great Arteries I found this YouTube playlist with a series of videos from the Children’s Hospital of Philadelphia that explains and shows it really well. It’s about 20mins worth of videos.
We’re almost up to date!