Anna’s story

I found out I was pregnant with my second baby in May 2016. I booked myself in for a private gender scan on August 17th, when I would be 16 weeks + 4 days. The sonographer was absolutely brilliant and after confirming we were having a girl she proceeded to check the baby’s organs, growth etc. She noticed there was a problem with the baby’s heart. She wasn’t getting a clear view of the four chambers and wrote in her report “right ventricle appears to be hypoplastic”. She insisted I go for another scan right away.

A little scared and confused, I called triage straight away and explained the situation to them. We arrived a short time later at my local hospital and after waiting for what felt like forever, they said they would refer me for a detailed cardiac scan for the baby. I received an appointment for a scan the following Tuesday.

The next few days while we had to wait were torture… I found myself day and night on Google, researching, trying to find out all I could about HLHS.

I just couldn’t put my baby through having all those painful surgeries to possibly even die before she reached school age.

Tuesday finally arrived and I was beyond nervous, I felt sick and extremely anxious. The doctor called my name and I walked in to the room with my husband. I lay down and the sonographer started. Within a couple of minutes the doctor said “There is a problem with your baby’s heart and we’ll have to discuss your options in the next room”. A hundred thoughts were going through my mind. The scan went on for a further 15 minutes. It was extremely detailed. Once it was over my husband and I were asked to go to the next room with the consultant, doctor and midwife.

The doctor drew us a diagram of what a normal heart looks like and of what our baby’s heart looked like. That alone was scary. It wasn’t just one problem, it was four. Our baby basically had half a heart, the two main arteries were the wrong way round, there was a blockage at the top of the heart and not enough blood was going to the baby’s brain. He went on to explain that our baby would have extreme learning difficulties; would need three major open heart surgeries by the time she was two; there was only a 60% chance she would make it to school age; she wouldn’t have a “normal” life; be limited to what she could do…as we knew she was a girl we were told she would never be able to have children as her heart wouldn’t be strong enough. 

My husband and I burst into tears. The doctor explained that there was no right or wrong decision, that 50% of women decide to continue with the pregnancy while the other 50% decide to end it. My husband and I had always said if our baby would require all these surgeries and complications that we would terminate the pregnancy. I just couldn’t put my baby through having all those painful surgeries to possibly even die before she reached school age.

As I was now 17 weeks + 3 days they said the best thing for me to do for my body and any future pregnancies would be to give birth to the baby, I would be having an induced miscarriage. I’d be going back to my local hospital the next day and there they’d give me a pill to reverse the hormones and stop the pregnancy. That takes 36-48hrs to take effect, then I would return to hospital on Friday.

I checked in to hospital on Friday at 10am. A midwife spoke to me about the process which followed as well as what pain relief was available to me. At midday the midwife returned with four pills (two for me to take orally and two vaginally). If these didn’t take effect then I would have to swallow a further four pills after 3 hours.

At 3pm, the midwife returned with four pills and after taking them my contractions started at 4pm, out of nowhere and extremely painful. I wasn’t quite sure what to expect next but it was very different to how I thought it would be. I lay on the bed, in a lot of pain. I asked the midwife for some pain relief and was given morphine. By 7pm it was all over. It was exhausting, emotionally, physically and mentally. My midwife reassured me that we did it for the right reasons as the heart problems my baby had were extremely rare and it was the best thing we could have done to save our baby from any pain and suffering.