Too Much Information

I said in a previous post that after you end up in intensive care you become very knowledgable about lots of different medical jargon. I remember speaking to my uncle (a paediatrician at GOSH) after our first scan with Etta before we really knew what it was. He talked us through some possibilities and said that if the heart defects were confirmed then we would soon become experts on whatever she had. How right he was! The thirst for information was all-consuming- from survival rates to surgical procedures and from chances of genetic conditions to quality of life with different defects. There was so much research to be done.

Even once Etta arrived, the googling didn’t stop! I was constantly on my phone looking up different acronyms I’d seen on her notes and other things they had mentioned. And then she died and it felt so strange to not be googling anymore. We’d spent months preparing to be a ‘heart family’ and everything that would entail and then suddenly Etta had died and there was all this information and no place for it anymore.

A photo I took of Etta’s screen in NICU so I could google everything to my heart’s content

I remember crying about it to Sam and being confused. Why was I upset about not having to look up words or read obscure medical journals anymore? We unpicked it and realised that it came down to being experts on Etta. We didn’t have the expertise to fix her but we were the ones who knew her best. Suddenly that expertise was displaced and it didn’t matter anymore how much we knew because it wouldn’t bring her back. It felt a bit like me pumping breast milk around the clock- it felt like something tangible to show our love for our daughter and now it was pointless.

Just yesterday, I was looking up Etta’s conditions again. I don’t really know why but I suppose it helps me feel close to her and also I’m still a little bit in denial that I don’t need to know these things anymore and never will again. Sometimes I still find it hard to believe that she died because the outcome was so far from what we thought would happen. And I still worry that with everything we knew, there was something we could have said or done to save her.

So instead of this knowledge being completely useless, I thought I could share a little of what I’ve learnt over the past 10 months. Sadly, you may experience it yourself or have a friend/colleague/family member experience it at some point as 1 in 100 babies are born with a congenital heart defect (or CHD).

This week is Little Hearts Matter’s anniversary and awareness week- a charity who support families and children with a single ventricle heart condition. LHM was the first website we looked at when trying to work out what Etta’s diagnosis could be and they have continued to support us after Etta’s death. Etta was a little bit in between having 2 working ventricles and only 1- she had something called a DORV (double outlet right ventricle) which meant oxygen-poor blood was being pumped around the body. Also, the left side of her heart (ventricle and aorta) was smaller than it should be. Etta ended up going down the ‘single ventricular route’- using half her heart to pump blood around the body – but unfortunately her heart function was too poor for even this to work. I will continue to share some of their posts this week on Facebook and the betterforetta Instagram page.

A week sharing what life is like for children with single ventricle conditions, especially during the coronavirus pandemic. Their motto is ‘Half a heart, not half a life’.

Some Facts About CHD

1. CHD is the most common form of birth defect. A child with a heart condition is born every 2 hours in the UK. This means that every day 12 babies are diagnosed with a congenital heart defect in the UK. That’s 12 families that are suddenly catapulted into a terrifying journey they didn’t ever imagine they would be on. The most common type of defect is a ventricular septal defect or a VSD- which means there is a hole in the heart between the two ventricles. Etta had a VSD and also a smaller ASD (atrial septal defect- a hole between the atria). One of our cardiologists told us that up to 1 in 3 people actually have a hole in their heart but obviously in most cases it closes on its own or doesn’t cause symptoms.

2. Congenital heart defects are formed in the first 8 weeks of pregnancy. In most cases there is no real understanding why. The lovely foetal medicine staff told me there was nothing I did wrong but of course I still feel guilty for not taking folic acid every day and I’ve looked back at that time and wondered if I had an infection or something else that caused it. But the truth is we still need more research into the hows and the whys. The British Heart Foundation are currently funding research into the genetic and environmental factors that could affect CHD developing in pregnancy.

3. Only around 50% of babies are diagnosed with CHD antenatally (usually at their 20 week anomaly scan). This is probably the statistic that scares me most because it makes me worry about the health of future babies I haven’t met yet- family members and friend’s babies that might be more at risk because a heart defect wasn’t spotted before they were born. Things are improving in this regard- 10 years ago the stats were around 35% detection rate so things are moving in the right direction but maybe not quick enough. Tiny Tickers are a UK charity who are working hard to improve early detection for babies with serious heart conditions. Part of their work is training sonographers to help them pick up on heart defects in antenatal scans.

4. 6000 children are born with a critical or serious heart condition every year and around 1000 of those leave hospital and go home because their heart condition wasn’t picked up. I can’t imagine the shock of getting a diagnosis after you’ve brought your child home and thought they were healthy to then be bringing them back into hospital fighting for their life. But we did see it happen plenty in PICU. Etta’s antenatal diagnosis wasn’t quite right but it was pretty close- and meant she was in the right place for surgery when she was born.

5. Before the British Heart Foundation existed (in 1961) 8 out of 10 babies with CHD died before their first birthday but today 8 out of 10 children survive into adulthood. Of course this varies depending on the heart defect. Single ventricle conditions (where only one half of the heart is working effectively) have lower survival rates. The first surgery that is required for children with these conditions is often called the ‘Norwood procedure’ or a shunt and has a survival rate of 60-70%. This is the last surgery that Etta had at 25 days old after trying other open heart surgery options first.

Etta after her first open heart surgery at 10 days old

6. About 25% of babies with CHD are ‘critical’ forms of CHD where it is likely that they will need surgery in the first few months of life. We were expecting Etta to need surgery in the first few weeks of her life. It was a bit of a shock that at one point we were possibly going to be discharged because her heart was coping so well on it’s own. This would mean she could get a bit bigger before surgery to close her VSD at a few months old. However, the following day after this discussion she began to go into heart failure and needed extra help with breathing so open heart surgery was booked for Etta at 10 days old.

7. CHD can be treated but it can never be cured. It is a life-long condition that will need regular check ups and possibly medication and reintervention. Children with single ventricle conditions like Etta will have at least 3 open heart surgeries before they are 5 years old. Etta had more than 3 before she was even 1 month old. They are often described as palliative surgeries because they can only improve the quality of life. The longest survivors of hypoplastic left heart syndrome (a single ventricle heart condition) are now in their 20s and may need heart transplants. The future is still quite uncertain for children and adults living with half a heart.

8. CHD is often a hidden disability. Children with CHD can often struggle with everyday activities like feeding and exercising but it’s not always obvious that they have a disability. I remember being terrified at the prospect of taking Etta home and waiting for her to go into heart failure before her next surgery would be booked. Babies and children with heart defects can struggle to feed or put on weight, become exhausted by normal daily activities, struggle to stay warm and there is a whole host of other worries that might not be visible to others. I don’t really understand how Sam and I could have ever slept again and it’s hard to imagine living with that sort of anxiety for your child every day.

Signs of Heart Failure in an Infant

Due to many heart defects being undetected in pregnancy, many campaigns have been launched to help spot CHD. The ‘THINK HEART’ initiative was set up by Dr LaRovere at the Royal Brompton Hospital to help spread awareness to parents and health professionals about the signs of heart failure in a newborn.

Think HEART from the Tiny Tickers campaign

HEART RATE- Is your baby’s heart beating too fast or too slowly? It should be around 100-160 beats per minute.

ENERGY– Is your baby sleepy, quiet or floppy? Are they too tired to feed, or falling asleep during feeds?

APPEARANCE– Is your baby a pale, waxy, dusky, blue, purple, mottled or grey colour?

RESPIRATION- Is your baby breathing too fast or too slowly – it should normally be 40-60 breaths per minute?

TEMPERATURE– Is your baby persistently cold to touch – particularly their hands and feet?

This isn’t supposed to scare anybody, but I think it’s useful to know the signs to look out for. Etta looked really healthy when she was born and the only thing that stood out in her appearance to me was that her feet were quite cold and purpleish.

Today should have been a Little Hearts Matter memorial event and also we were planning to go to Bristol Cathedral for a memorial service for all of those at Bristol Children’s Hospital that have died this year. I’m really sad we can’t go and celebrate Etta’s life around other bereaved parents due to coronavirus but I hope this is a fitting way to remember her today. A little bit of her legacy is spreading information about CHD- even if it only helps one family spot the signs or feel a little bit less alone. ❤️

Etta looking completely perfect ❤️

One thought on “Too Much Information

  1. Etta looks so beautiful and perfect.

    The information you have provided Emm, is so clear, I am certain you are helping so many people.

    Thanks Emm for having the courage to share this with us all.

    So much love to you, Sam and Ezzy.

    Xxxxxxxx 💞

    Liked by 1 person

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