Etta’s Diagnosis

So where does Etta’s heart journey begin?

I think it’s fair to say our lives changed forever on July 11th 2019. I feel very lucky to have had a really smooth pregnancy with Ezra and because of this I went into our 20 week scan with baby number 2- as I think most do- looking forward to finding out if we were expecting a baby boy or girl. I hadn’t really expected anything but a healthy baby.

The sonographer was taking a while to do all the checks but at this point I wasn’t worried because I know from experience that getting those wriggly babies into the right positions is tricky! After a while, she said “I’m really sorry but I’ve been looking for a long time now and I think there’s something wrong with your baby’s heart.” She explained she was struggling to see the 4 clear chambers of the heart. She said that it could still be positional (baby not in the right place to get a clear view) but we would need a referral to fetal medicine for a scan with a consultant.

Now of course it could have been positional but with Ezzie they couldn’t get the images they needed to they invited us back the following week with a sonographer to try again (and still couldn’t get him in the right position) so the fact we were referred seemed to me very much like there was something! We asked what the gender was in that scan and the sonographer said she wasn’t sure. Part of me now wonders if she was trying to protect us a little bit from thinking of Etta as our little girl.

I remember getting home that day to where my Mum and Dad were looking after Ezzie and just crying as I hugged my dad saying “They think something is wrong with the heart”. We were scared and we were in shock and we knew we had what would feel like a lifetime to wait until we could be sure. The NHS aim to see you within 3 working days but because we were seen on a Thursday afternoon our next appointment wasn’t until the following Tuesday- cue lots of anxious googling.

That was the first time we stumbled across Little Hearts Matter- which gave lots of information on single ventricle conditions (or half a heart). We were now thinking that our baby (still didn’t know it was a girl!) might have a condition called Hypoplastic Left Heart Syndrome because of what the sonographer saw- or didn’t see. Healthy hearts have 4 chambers- 2 atria and 2 ventricles but maybe our baby didn’t have all 4 fully grown? This condition would mean a lot of high risk surgery and potentially a heart transplant or many couples choose to terminate the pregnancy for medical reasons. If our baby survived they would still be really sick for the rest of their life. We spent all weekend trying to prepare ourselves for this new possibility.

The following Tuesday came along and we met our fetal medicine consultant Mr H and walked into a room full of people (We now know only too well that lots of people = not good news) There was a midwife and a nurse and an antenatal screening midwife all in there to support us. Mr H told us what we already knew- there’s something seriously wrong with your baby’s heart and what we didn’t- it was a little girl! The left side of her heart did indeed seem too small. We were run through the options for what we could do next-

• Be referred to St Michael’s in Bristol for an in-depth ultrasound scan with a fetal cardiologist
• Undertake more antenatal screening tests like amniocentesis to rule in/out any genetic disorders
• Terminate the pregnancy

We decided to try and get a clearer picture from St.Michael’s of what we were dealing with and were very lucky to be given a scan the next day. This was in my last week of school in Summer term and I was supposed to be going on holiday to Spain with my gal pals so it was a completely surreal and hectic time.

We went through to the fetal medicine unit at St Michael’s and had another scan and afterwards were taken to a tiny room for a debrief with our cardiac liaison nurse and fetal cardiologist Dr C. We were told that yes- Ettas’s left side of the heart was small but they didn’t think she had hypoplastic left heart syndrome (HLHS) but actually had something called coarctation of the aorta (where the aorta narrows so much the blood can’t flow properly to the rest of the body) and a VSD (a hole in the heart between 2 ventricles). If this was the case then the survival rates and quality of life would be excellent. It sounds strange to be thrilled about your child’s heart defects but we were. It meant that, despite annual cardiology checks, Etta would likely have a very healthy normal life.

However, we were also told that although the left side of her heart was adequate at 20 weeks- it might stop growing which would mean by the time Etta was 40 weeks it would be too small to function. We would have to wait and see at the next scan whether this was happening. This was really hard. We could do nothing but wait and hope our baby girl’s heart would grow. It’s so strange to feel your baby kicking away inside of you and there’s nothing you can do to help it survive but wait and pray. That’s what we did.

We came back to St Michael’s 5 weeks later and we were so happy to find that her diagnosis hadn’t changed! The left side of her heart was still growing and we made a plan to deliver the baby in Bristol so Etta could be transferred to the NICU and started on a drug called prostin right away- this would keep her heart acting as if she was still a foetus and keep a duct open to allow blood to flow round her body.

Our 32 week scan was the ‘biggy’ as we called it. These would be the best images of her heart they could get before the birth and we would also be given a tour around NICU at St Michael’s and the cardiac ward and PICU at Bristol Children’s Hospital. The scan showed that she was developing well- it was likely she would need open heart surgery after she was born but as Sam kept asking (!) she could be an elite sportswoman when she grew up- her long term prognosis was good. We were booked into fetal medicine at Bristol- told that Etta’s heart wasn’t that complex (hooray!) and had our tours. NICU felt very serious and quiet but that makes sense with the tiny tiny and very sick babies that lived there, whilst PICU felt noisy and more relaxed. It was hard to imagine that the baby in my tummy would be in one of those cots soon enough. But only 6 weeks later she was!

I sometimes wonder what would have happened if Etta wasn’t diagnosed at her 20 week scan. Would the doctors have picked up on a heart murmur in her newborn checks? Would we have taken her home only to have been blue lighted to Bristol when something seemed terribly wrong? We’ll never know 🤷‍♀️

I felt so grateful in pregnancy that they found out about her heart defects early and we could put a plan in place. I remember seeing those parents in PICU who were rushed in in an ambulance with no clue how sick their cardiac baby was. (Only 50% of congenital heart defects are picked up antenatally). They weren’t only devastated for their sick child, they were also in clear shock that the thing we are most terrified about as parents had happened. I felt so lucky that we knew and I felt so lucky about how well we were treated by all the amazing NHS staff. I thought a diagnosis would give her the best chance of survival. But she still died.

I now keep asking myself again and again if we didn’t find out before she was born- would she have lived? Maybe… but asking questions won’t bring her back.