Alexander's Story
Being told our son had a heart defect and required surgery was a huge shock to us. There was nothing detected on the many ultrasounds scans I had throughout my pregnancy, and having no family history of heart issues, it never crossed our minds there could be a problem.
Alexander was born at 37 weeks and seemed to struggle to regulate his vitals as well as being very jaundice. Initially, this was thought to be due to his quick delivery causing severe bruising, but after many tests and scans were done, an abnormal, but working, pulmonary valve was detected.
In addition to this, only a few days later, we got the results of a genetic test and he was subsequently diagnosed with a rare genetic condition called Simpson Golabi Behmel Syndrome, likely the reason for his heart defect. Even after being told about the abnormal valve early on, it wasn’t until a follow up cardiac clinic appointment when he was 3 months old, that we found out he had something called Supra-Valvular Pulmonary Stenosis. A narrowing above the valve as well as an abnormal valve itself, and would require open heart surgery to repair.
From there everything seemed to move very fast, and just 6 weeks later he was in for the surgery.
The surgery was a success and after a tough 9 days recovering, Alexander got to come home. The surgeons and the entire cardiac team were fantastic and very supportive throughout.
Receiving our Molly’s Dolly
In the post several weeks later brought a smile to all our faces. Although Alexander is still a bit young to fully understand, the doll and the accompanying children’s story book, it has helped to normalise his scar and explain the situation to his older sister Louisa. She was amazed to discover the doll had the same “scratch” as her baby brother. In future, we hope this will also help Alexander understand and accept what he went through, but for the moment he just enjoys playing with it.