After the call last Tuesday from the charity I mentioned I received the final draft via email this morning. I know there’s hardly anyone that gets what a big thing it was for me to share my sons story but I’m proud of myself. It was hard and emotional telling it but I hope that it can provide some comfort to another family dealing with what I dealt with.
Here’s the final draft obviously for my privacy I’ve removed names and any personal details inline with my blog.
Or’s story K already had a son, O when she and her husband decided to try for another baby. They had no trouble getting pregnant and the nine months of pregnancy passed without incident. In April 2015, little Or arrived by emergency caesarean section and seemed perfectly healthy. However, the next day, during Or’s newborn tests, the medical team noticed a heart murmur. Although relatively common in newborn babies, Or’s doctor decided to investigate further they did an ECG and Or was sent for an echocardiogram later that day that revealed he had a congenital heart defect – Tetralogy of Fallot. K was in complete shock and couldn’t take anything the doctors were telling her in. Her little boy had been feeding well, his colour seemed fine – she couldn’t believe this was happening to her baby. Why Or? K blamed herself – thinking Something she had done during pregnancy caused Or’s condition. Tetralogy of Fallot usually does not require immediate surgery, so Or was sent home from hospital and began to settle in with his new family. His first cardiology appointment was at 4 weeks old. It was during that appointment that she was told the full extent of Ors condition and that it required open heart surgery at around 6 months old. K was warned to keep an eye out for any signs of heart failure – colour change, lethargy and rapid breathing. They had regular check-ups – and one month before Or was due to have surgery, at 5 months old, The community children’s nurse noticed that Or’s oxygen levels were dropping. Immediately blue-lighted to their local hospital and then, after a further drop in oxygen levels, to the regional cardiac unit , Or was beginning to turn blue and was breathless. His heart was beginning to fail. Five days later, when he was strong enough, Or had open heart surgery to correct the defect. It lasted 5 hours. Finally K and Her husband were told that it had gone well, and that they could come and see their baby boy. The relief that K felt was so strong that it overrode any pain and fear she felt at seeing her little boy hooked up to machines. He was alive, and that was all that mattered to her. After a week in Intensive Care, Or was transferred up to the ward, and 8 days after the operation he was discharged from hospital. K felt elated. She couldn’t wait to get home, back to normal and back to her own bed. That was 1 year ago. Despite a few small issues since then, Or has gone from strength to strength. K says, “We were so lucky. If the newborn checks hadn’t been done so thoroughly, and if the ECG machine hadn’t been on site, our story may have been very different. Or is a cheeky, mischievous and very observant little boy, and he utterly adores his big brother, O. The work of T T is so important to find babies like Or. The earlier these defects are picked up, the better for the baby and their family. I am so grateful that Or was given the chance to fight his condition.”
Still feel emotional reading this even though I’ve read it over several times. I’ve written this story myself in my very first couple of posts but this is written by someone else as told by me.