Caleb’s heart condition, hypoplastic left heart syndrome (HLHS), was discovered during a routine scan. After an incredible fight, Caleb tragically passed away in his mum, Rebecca’s, arms. Here, Rebecca shares their emotional story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
When I was 23 weeks pregnant, I went for my anomaly scan. It seemed to go on forever. At the end of the scan, the sonographer apologised and told us she had seen a problem with our baby’s heart. We were absolutely heartbroken. We were booked to see the cardiologist the following week.
At the appointment, they confirmed that the baby had hypoplastic left heart syndrome (HLHS). They also performed an amniocentesis, which thankfully came back clear. We were told that the baby’s heart condition was very severe, and we were offered a termination. We declined, as we knew there would be the option of surgery.
We were put in touch with Tiny Tickers and Little Hearts Matter. Both organisations have been incredibly supportive throughout my pregnancy and have been amazing!
Caleb’s birth was a very positive experience for me. Though we were scared about what was to come, I felt prepared after reading other people’s stories. When Caleb was born, I was able to have skin-to-skin contact for ten minutes. He was then passed over to the team, where they cleaned him up and checked him over. Once they were done, I was able to hold him for another five minutes before they had to take him. I saw him again once he was settled on the ward. The nurses were all so supportive.
Caleb was transferred to the children’s hospital the same day. He seemed to be doing well but began to struggle during the night, so we were moved to the high dependency unit.
At just three days old, Caleb had his first surgery — the Norwood procedure. His surgery took about five hours. This time was incredibly nerve-wracking, but he did so well! A week later, he needed another surgery for a valve repair, which also went well.
The past few weeks have been tough. It has felt never-ending. Recently, Caleb had another surgery to have a stent fitted.
There have been many ups and downs, and you never know what to expect. Caleb is now on ECMO — life support — to give his heart and lungs a rest from all that has been happening. We hope that he will soon recover and be able to come off it.
Caleb’s update
Caleb went on to face three more operations — a diaphragm plication and two thoracic duct ligations — each one showing us just how brave and strong he was.
There were so many ups and downs, moments of hope and moments of fear, but through it all he showed so much courage. His strength gave us strength and his love filled every room he was in.
On 14 July 2025, after fighting every battle placed before him, Caleb gained his angel wings. His heart never failed him — it was the complications after his surgeries that became too much. He passed peacefully in Mummy’s arms, surrounded by love.
Though his time here was short, he changed our lives forever. He will always be remembered as our brave boy — our son, our sunshine, our everything. Our hearts are shattered and my arms will forever ache.
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