In our second piece doing Baby Loss Awareness Week, a local woman shares her experience of losing her son Alfie to a rare heart defect.

The 5th of October is Alfie’s angelversary, it’s 13 years asince we lost him.  We only got to enjoy him for 4 short weeks, but he will be loved for a lifetime.   

Alfie was my first baby. I had a wonderful pregnancy with all the scans looking great and a straight forward (if not long) delivery. 

After a few days in the maternity ward and the standard checks on us both we were sent home with a beautiful boy with a mop of dark hair. 

I enjoyed every minute of having a newborn and Alfie really was a delight. 

He lost a little more weight that they would have liked and looked slightly jaundice so back to the hospital we went and under the UV lights for a couple of days. All his levels returned to normal and back home we went. So far so normal.

Family traveled to the island to meet him and of course everyone fell in love. He was such a good baby, why wouldn’t they?! Time was flying by in a whirlwind of feeds, nappies and cuddles. 

On the 5th of October I woke at 4am. Something just didn’t feel right.  It took a minute for me to realise that Alfie hadn’t woke for his usual feed. I sat up and looked into his Moses basket. He looked so peaceful. I gently touched him to check he was ok. As soon as I touched him I realised something was wrong. He just felt too heavy and solid. 

Somehow I just knew it was too late but you hope against hope. The ambulance was called. CPR was performed. The ambulance arrived and they brought him downstairs for Oxygen. I felt like time stood still as I watched the crew do their very best to save our boy.

Then before I could take it in, we were in the ambulance being taken to the Hospital. I really didn’t want to go. I knew already it was too late. They worked on him for what felt like a really long time, and yet I have no idea how long it really was. Then the time came that I knew in my heart was coming since I woke up and touched his cheek, they said there was no more that they could do. He was gone. Our healthy baby just gone.

We got to hold him. We got to hold him in our arms, but our precious boy had gone. 

The police had to come to the hospital and later the house,  as at that stage it was an unexplained death. They were very understanding but we had to go over and over what happened in the lead up to when I woke up and then have it read back to us to make sure we were in agreement with what was recorded. 

Alfie’s body was sent away for a post-mortem. The thought of him going to the U.K. alone was awful, but we had no choice. We had to find out what had caused his death. 

The results came back and it was confirmed Alfie had an undetected congenital heart defect- EFE.

Here is a little bit about EFE.

Endocardial fibroelastosis (EFE) is a rare heart disorder. It is characterized by a thickening within the muscular lining of the heart chambers due to an increase in the amount of supporting connective tissue and elastic fibers.

It is hard if not impossible to detect on a scan. There was no cure. It was surprising he manage to survive those wonderful 4 weeks. 

The day Alfie was born was the happiest day of my life. I have been lucky enough to go on and have three more boys who bring so much joy (& chaos ) into my life. However, I know how cruel life can be now and how quickly things can be taken away. It changes you as a person. 

Alfie’s birthday and angelversary are always hard days. Milestone are hard too. When he would have started school, secondary school, becoming a teenager.

Having his brothers here is a comfort but also a reminder of what he should be doing. 

I know I was lucky to have him for 4 weeks I know many people don’t get that long with their angels, and despite how it ended, its was 4 happy weeks. You have to be grateful for what you had. I also know how lucky I am to go on and have 3 more healthy children. Many people aren’t that lucky. 

Rather than flowers for the funeral we wanted to give any donations to something that would help other babies and families like Alfie. My brother came across a charity online called Tiny Tickers. They do amazing work in the U.K. helping to train sonographers to detect heart defects in the womb. They are a small charity and generous donations from family, friends and my employer at the time meant that they were able to send their technicians to the island and help to train the sonographers at Nobles. This was amazing and not something we expected we just wanted more children with heart defects to be detected before they got sent home undiagnosed. 

My most recent baby is only 7 months and during our scans I was told that Tiny Tickers were due to provide some updated training (slightly delayed due to covid) but it makes me so happy that nobles hospital is still associated with the charity and hopefully, although our outcome wouldn’t have been any different, these donations have helped other babies get a diagnosis. It won’t take away the pain for families but it can give an early diagnosis and I hope in many cases a plan for treatment. It brings us such comfort to know that Alfie has helped other families in the same situation. Even though he isn’t here, he will always be in our hearts and his legacy will live on as he continues to help others. 

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