Endocardial Fibroelastosis – Eadie’s Story

When Eadie was born, she seemed perfectly happy and healthy. However, three months later her parents were left devastated when she passed away suddenly. Here her mum, Carina, talks about their traumatic journey and Eadie’s eventual diagnosis of Endocardial Fibroelastosis:

‘Our little Eadie was born on 18th December 2014 and was healthy and perfect in every way. It was an easy pregnancy with no complications, she was growing well and all scans showed everything developing as it should. The 40 week mark arrived and Eadie hadn’t arrived so an induction was started on 17th…..Eadie arrived in to the world safely. I, however, had lost a lot of blood and we needed to stay in hospital a few days to make sure I was fit to go home.

We eventually made it home and our new life as parents to a little baby girl began. We were so happy with our new roles as Mummy and Daddy, taking Eadie to visit family and friends regularly- we were very proud.

We went away for a week with our families in March 2015. We arrived on the Monday and all was fine, Tuesday came and Eadie was a little out of sorts being fussy with her feeding and generally quite sleepy – but nothing to cause alarm. Throughout the day she had taken a few feeds and settled at night and slept as usual. On Wednesday morning Eadie was not very alert and she started making a grunting noise. We knew something wasn’t right so I grabbed the essentials whilst Steve ran to the doctor.

The on site nurse checked all of Eadie’s vitals – temperature, heart rate, blood oxygen level. They were all fine. The nurse recommended going to the local walk in centre to double check and possibly get Eadie some fluids as she had not been taking as much milk.

We checked in at the walk in centre and only had to wait 10 minutes before Eadie was seen. Within five minutes of being in the initial assessment room, the nurse had picked her up and ran through to the emergency room. We had no idea what was going on and were completely horrified about what was happening.

Eadie was then on the resuscitation table with a team of specialists trying to determine what was wrong. It was a blur of people running about, pipes and tubes being inserted to Eadie’s nose and legs, people talking to us about what was going on (I cannot remember any of what was said), phone calls to try and arrange a transfer to another hospital and then a nurse coming over asking me to hold Eadie’s hand.

And then I knew…they asked me to hold Eadie’s hand as they stopped resuscitation. In that instance my world and very existence was shattered.

Everything happened very suddenly and we could not process of any of it. As we walked out of those hospital doors a completely different life took over, we were different people.

The next morning the police sat in our lounge and we had to recall every little detail of what had happened. We had our families around to support us, but it was just awful. They gave us a few leaflets and a 100 page coroners document and off they went. We had no clue what to do next, who to turn to, who could help us. We felt completely alone.

We had to wait 7 painful months to find out the post mortem results. During that time no-one gave us updates, we had to continually chase to understand the progress. We needed to make sure Eadie was considered and important to other people, we didn’t have anything else to focus on. The one thing that continually played on our minds was….’was it something I did?’ and ‘could I have done anything to save her?’

After about three months, we had our first session with The Laura Centre in Leicester. They offered us counselling to try and figure our way through our new lives. This helped us to navigate through the tough months of not knowing how or why Eadie died and allowed us to be honest with ourselves and with each other.

We eventually found out that Eadie had died of a rare, undetectable heart condition caused Endocardial Fibroelastosis. This causes the heart to grow scar-like tissue rather than muscle tissue and caused Eadie’s heart and organs to suddenly stop working. So far there is no understanding about what caused it but tests have shown that it is not genetic.

We decided early on that we would try for another baby, we needed that purpose in life again. In February 2016, our son Finley was born and we started to live again. We allowed ourselves to be happy and focused our energies on giving Finley the best start in life.

Eadie is a huge part of our lives and she is always with us. I do still feel a physical hole in my heart that will always be there but I have learnt to accept that it’s ok and I can continue living my life without feeling guilty. Finley is also monitored regularly at Glenfield Hospital to make sure his heart is developing as it should and this gives us an enormous amount of reassurance.’