I'm 24 years old and married. I live in Canada. My husband and I started dating in December 2005, got engaged March 2007 and married September 2008. We always knew that we wanted kids but wanted to wait until we were both ready. Originally we were going to wait until my husband turned 30 in 2011 (his idea) but he changed his mind and we started trying October 2009. We felt so lucky when I found out I was pregnant early December 2009. Our due date was Aug. 20th. I was referred to a maternity group since my doctor no longer delivers babies. I was really happy about this as they have an ultrasound machine that can see the baby as well as a heartbeat. I first saw them when I was 9 weeks and told them how stressed I was about miscarriage (I had cramping but no bleeding from week 3-14) so they did an ultrasound and showed me the baby and the tiny heartbeat. My next appointment was at 13 weeks. I left happy knowing I was out of the "danger zone" for miscarriage. I started to relax and enjoy the pregnancy a bit more knowing that in August we would have a baby. 4 weeks later (at 17 weeks) was my next appointment and this time I had a student. She used the doppler, but couldn't find a heartbeat. I wasn't worried though as I had recently felt the baby moving and kicking. She did an ultrasound and I got to see my baby again. This time she (we found out the sex later on) had hiccups!! I had my 18 week ultrasound booked the next week and was so excited to get pictures from an ultrasound. My husband didn't come with me because he had already seen the baby at the office so my mum and I went together. The ultrasound took an hour and I didn't think anything was wrong until she left the room and didn't come back for a while. As soon as she walked into the room with someone else I knew it wasn't good news. They told us that they were concerned with the baby's heart, specifically the left ventricle and that they would be contacting my Dr to send me to a perinatologist and cardiologist to do an echo on her heart.
A week later I was sitting in the waiting room at women's hospital waiting, this time with my husband and mum. First we met with a genetic counsellor to go over our history (there is no history. Both sides have never had any sort of birth defect or heart issue.) Then my husband and I went in for the ultrasound. The tech asked if we wanted to know what we were having (from the beginning of the pregnancy we decided not to find out, but with a possible issue I was done with surprises) so she told us the baby was a girl. She then left the room and 5 doctors came in to do the echo. I knew it was most likely serious when they were introduced as our "team" of doctors. It took an hour for them to do the echo on her and then we were led into a room with my mum to sit down with the cardiologist and genetic counsellor. We were told our baby girl had Hypoplastic Left Heart Syndrome. This meant she had a very small left ventricle and aorta as well as completely blocked mitral and aortic valves. It really hit me how serious this was when he said her left ventricle will never work. They gave us 4 options.
1- Terminate the pregnancy
2- Put her on a list for a heart transplant which would need to be done very soon after birth
3- Norwood procedures (3 open heart surgeries done at 5-10 days old, 6-8 months old and around 3 years old) By no means would this fix the problem but it was her best chance at survival.
4- Compassionate care (in other words do nothing for her and she would die within 2 days of life.)
We knew we would never do compassionate care so we did not ask questions about it. At that point I was nearly 20 weeks and we were told we'd need to decide if we wanted to terminate before 24 weeks (late term abortion is legal in Canada until 24 weeks.) They strongly recommended doing another echo in at 23 weeks to make sure there were no changes, so we went back for the second echo at 23 weeks with a whole bunch of questions we wanted answered. When we saw the echo being done on the screen we were hopeful as the left ventricle was getting some bloodflow now which meant the mitral valve had opened slightly. We sat down with the cardiologist to have our questions answered. It didn't matter that the valve was opening since the ventricle was too small to be able to function. My husband then asked about something he had overheard the doctors talking about while doing the echo. The concern about the size of her aorta. It was then we were given more bad news. While the rest of her heart had continued to develop and grow in size the aorta had stayed the same size. When they did the first echo the aorta was on the smaller side even for this condition and that is why they recommended the second echo. This meant that surgery and transplant were no longer an option. We were left with compassionate care (which we had been so much against) or termination. We took the weekend to discuss what to do.
On April 27th with heavy hearts we went to the hospital at 7:30 am and they stopped her heart. I was then induced and she was stillborn at 22:56 on April 28th. We named her Hailey and spent the rest of the night holding and taking pictures with her. My mum, sister and dad (my husbands family all live in Australia) were all there to see her and say goodbye. We left the hospital on the 29th.
There is so much more to this story, but I felt I've already made it so long I'd try to keep in quick.
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