Hailey's cardiac surgeon

Before I start I want to quickly go over what happened with Hailey. We were sent for an echo after the 18 week ultrasound showed a potential problem with the left ventricle. At 20 weeks we had the echo and a cardiologist, neonatologist and OB then had a meeting with us and diagnosed her with HLHS. At that point they laid it all out for us. They explained the surgeries with drawings and also gave us the options of transplant, termination and palliative care. We were told that they were in talks with a doctor from the US who does the surgeries and that he might be coming in July or August and they were hoping he'd be able to do them here. They made us fully aware there was a good chance we would have to travel at 32 weeks to either Edmonton or Toronto (the flight would be covered but accommodation near the hospital would not) if he couldn't start in time. They highly suggested we have another ultrasound done at 23 weeks to make sure there were no changes as surgery and transplant aren't always an option. At the 23 week echo Dan was listening to the doctor's talking and asked what they meant about the size of her aorta. It was then that they told us her aorta had been on the smaller side of "normal" for HLHS at 20 weeks and in the 3 weeks it hadn't grown at all with the rest of her heart. They then said this meant surgery and transplant were no longer an option and we were left with ending the pregnancy and palliative care. We had 5 days to decide as termination of a pregnancy is only legal in Canada under 24 weeks.

Yesterday the cardiac surgeon who would've done Hailey's surgeries was on the news. I watched it today and it talked about how much he was needed here and how crappy it was for families to have to travel to either Edmonton or Toronto to have complex heart surgeries. Watching it made me angry and sad. I'm sad that he never got to see Hailey and there was so much uncertainty if he would be here in time to do her surgery so we might've had to go to either of those hospitals. It makes me angry that we never actually got to speak to anyone who does the surgeries. I never really thought about it until today but the only people telling us about the surgeries and the complications and what to expect were doctor's who never actually dealt with HLHS patients. I wish we'd had the chance to sit down with someone experienced with the cases not just someone who diagnoses and then sends them away.

I guess I'm really just sitting here thinking how could I have not spoken to a cardiac surgeon or cardiologist or even a cariac nurse who has experience with what happens after the surgeries. We were so stretched for time I didn't even think to question that the doctor telling us her aorta was too small wasn't actually the doctor who would ever see her heart. I'm so angry at myself for not thinking about this. I would've travelled. I would've gone to the US to speak with that surgeon to know for sure. I can't believe this never crossed my mind. I'm trying not to beat myself up about it. I think back to how I was emotionally during that time and I don't think anything I did was with a clear head from the moment I heard there was a serious problem. I trusted the healthcare professionals around me and still have to now. I just need to remind myself that at 23 weeks her aorta was 1/5 the size of a healthy 23 week baby and she still had another 17 weeks of growing.

I was thinking today about this baby and worrying about if I'll compare it to Hailey. Will I say "he/she looks just like their sister did." or will it be they look nothing alike. Hailey was beautiful to me. I'm sure if this baby doesn't look like her I'll still think they are too but even now I look at the ultrasound and I compare their noses and I get sad because I loved Hailey's little turned up nose and I don't think this baby has it. Will I compare all the features that made Hailey unique? I know deep down I love this baby growing inside of me but I still don't think of it as mine. I still don't think of this baby as something I'll take home in less then 10 weeks. I'm hoping it'll all make sense and get easier once the baby is here.