I had a difficult birth with Kaidon, when he was born he needed oxygen. Only a few days later he was sent home with the doctors saying ‘all was fine’.  Kaidon wasn’t feeding properly and was still jaundiced, when I asked the midwife and health visitor what was wrong, they told me it was because he had a difficult birth.

I took Kaidon to the doctor because his belly button hadn’t healed properly, they said he was breathing from his stomach and they said we should go to the hospital for an overnight stay. When we got to our local hospital they said it was the worse case of heart failure they had seen and to expect the worse; they didn’t think he would pull through the night. The next morning we were sent to Alder Hey Hospital where he  had his ‘arch repair’ operation, which was followed by seventeen long weeks in hospital.

Last year Kaidon had a repair to make his heart into one pumping chamber; so now he has half a heart. The operation went well but they couldn’t get him off the oxygen, so they sent him for a test where they found he had a blood clot and a collapsed lung. He was then sent back to the Intensive Care Unit and spent 14 hours in theatre – he had 24 pints of blood when he came out of theatre but he still had low oxygen saturation levels. They took him back down where they found the stent was twisted, so they repaired that too. He spent his 1st birthday in ICU, he will need his next operation between 4 and 8 and will need a full heart transplant in the future.

By Kaidon’s Mum