Better for Etta

Every pregnant woman will tell you that the last few weeks of pregnancy drag- especially if you are overdue! I can add especially if you are waiting for a NICU cot to become available and you are waiting to embark on what will be the scariest time of your life!

I was due to be induced in Bristol on the 20th November at 38 weeks. However, our cardiac nurse did warn us we were likely to be bumped a day or 2 depending on space in the delivery suite or NICU. Of course- no sleep was had the night before we were due to go in. And then the phone call came that it wouldn’t be today- and repeat Thursday repeat Friday until finally on the 23rd it was all systems go!! The waiting was honestly horrendous. Just a weird no-man’s land. Luckily my brother, mum and dad were around to lighten the mood and play with Ezzie.

We arrived at St.Michaels and were given a tour around the maternity ward and induction rooms- it was very slick and we were so well looked after (the common theme for us it must be said). I’m not going to lie but I was feeling pretty cocky! I’d been induced before with Ezzie (leaking waters at 40 weeks) and it went super smoothly. I just had the pessary and my waters broken and that was enough. I expected it would be the same again… I was wrong!!

Chilling in my giant room! No contractions… as you can tell by the smile!

So many a pessary over the next 36 hours and not a sign of contractions but finally a junior doctor thought my waters were ready to be broken so then was the long wait for the delivery suite! We were warned it could be over 24 hours 😬😬😬 but actually for me it was the following morning. So Monday (25th) mid morning we headed down to the delivery suite- baby Etta was well on her way!

After a freak out that she might actually be breech (I was adamant she was head down) we had our 1000th ultrasound to check her position and we were good to go. Until the lovely midwife actually took a good look inside and basically said she couldn’t break my waters. My cervix was not a labouring cervix! The junior doctor should have gone for an extra pessary as it turns out but instead of returning to the maternity ward I was like nope- do what you’ve got to do and break these waters! The poor midwife had such a tricky job- she said it was the hardest ARM (artificial rupture of membranes) she’s ever had to do and that I was what they would call very ‘tolerant’. She really had to rummage that knitting needle. But for the sake of any squeamish people reading we’ll move on. My waters were broken at 12 pm and we waited.

I was so so hoping that would be enough to get stuff moving. I’d done a hypnobirthing course- I was chilled watching First Dates, I was bouncing on the ball, I had my aromatherapy on the go, I was dancing to a lot of Lizzo. Really what more could I do to get that oxytocin working? But alas- nothing. So the artificial oxytocin drip went in (this meant no more food 😭) and I was then attached to a stupid pole. My hand swelled up because the cannula was huge and not quite in the right place (a student paramedic put it in and I’m not sure it was the best job 😬) I did not enjoy the drip. But I really shouldn’t complain because Etta had countless drips and lines and was a trooper. She was much braver than me.

Anyway the contractions started- it was all manageable with some deep breathing. I was determined I didn’t want too much pain relief because I didn’t want to increase the chance of intervention and therefore a longer recovery. I wanted to be fully in control of my pushing for the same reason. Basically I was trying all that was possible to make sure it was the safest birth for Etta and would allow me to be up and walking about as soon as possible so I could go visit Etta on NICU and go see Ezzie (staying at an Air B n B nearby with my Mum and Dad).

With that in mind I waited until I was 5 cm to get on the gas and air. I needed to make that stuff last! But THE CONTRACTIONS WERE SO MUCH WORSE THAN WITH EZRA! I imagine it was probably the drip- I was on the highest dose so they were coming thick and fast. I think about 11 pm my pulse was too high so they put me on fluids as well- although she thought it was probably just the pain. And about 11.30- I was incontrollably shaking. That’s when my midwife told me to take some oramorph and I asked for a vaginal examination. I’m not sure what would have happened if I was only 6cm… I was 8 cm and she thought the shakes were probably part of the ‘transition’ – getting ready to push. She was right because about 15 mins later I was pushing. The oramorph didn’t even touch the sides!

NICU were called and Etta’s NICU nurse and doctor came into the room just in case she was poorly on delivery. I really wanted to be mobile for delivery or upright but I was shaking so much the only thing I could do was lie on a bed. Luckily, it was still OK. It was very close to midnight and we were hoping she would be born on my brother’s birthday (25th) In fact Sam was counting down the minutes while I pushed… always helpful! But 16 minutes of pushing later and she was here- 7 lb 8 oz of perfection at 1 minute past midnight on the 26th. I just remember holding her to my chest and saying “Hello beautiful girl!” over and over again. She was here and she was safe and the first hurdle was over!

“Hello beautiful girl- you are so loved!”

We got lots of snuggles and pictures and then she was taken up to NICU to get her settled in her incubator. That gave me chance to have a bath and be milked by the midwife for a bit of colostrum. And of course tea and toast. (I didn’t get toast after giving birth to Ezzie and I feel robbed). I feel like the lack of epidural paid off because no tears or stitches- hooray! And I really did recover very quickly.

I then got wheeled up to see Etta in NICU and she was gorgeous! After that I went up to the maternity ward for some sleep- but sleep never happens after you’ve had a baby. I was sharing a room with a mum who was evidently part warthog and I was too excited about Etta finally being here!

A couple of hours after she was born. All settled and her line already in her umbilical cord for drugs. She had the dummy a lot because she was hungry but not allowed to feed due to her coarctation.

It’s sometimes easy to forget her birth because it feels overshadowed by her death. And sometimes it’s nice to talk about her birth story like I’m just another mum with a newborn who is still here. I feel very grateful that I’ve had 2 stress- free natural births. I’d be lying if I said it wasn’t painful but I got the birth I wanted: Etta was happy and healthy throughout and I recovered quickly so I could spend all the time with my children. What more could I have asked for? ❤️

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 didn’t take any bump pictures in this pregnancy- I think partly classic baby number 2 and partly anxiety about it all. But now I wish I had some! This was the day before I was due to be induced at Bristol.

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.

Welcome to the world Etta Grace Libi!

Etta’s Diagnosis