All grown-up and ready to help all the ‘sick kids’: as told by his mum Helen.
5 year old Alex had open heart surgery when he was just 8 days old, fast forward 5 years and Alex is turning out to be one of HeartKids youngest and most enthusiastic fund raisers. Recently as part of his baby brothers first birthday party Alex decided to hold a Lemonade stand “for the sick kids in the hospital”. He did an amazing job organising the stall, taking care of the money (drinking lots of soft drink!) and raising $127.20 all of which he has donated to HeartKids. Now that is what you call a HeartKid of the month!!
We first had an inkling something was wrong at the 12 week nuchal scan. The measurement was large and all we worried about at that time was a chromosomal abnormality like Down’s Syndrome. We decided to have a CVS test because we wanted the time of our child’s birth to be happy and not be finding out any bad news. It came back clear and we breathed a sigh of relief. There might be something wrong with his heart, but we had seen it beating, so it couldn’t be that bad. Right?
At the 20 week echo scan we had a student scan his heart. She kept doing it again. Finally the consultant said “If you can’t see it, it usually means it isn’t there”. Well that sounded good. Then he turned to us and said “There is something wrong with your baby’s heart, I want to have another look and then I’ll explain it”. I lay there for what seemed like hours crying floods of silent tears, while he finished the scan. Then he explained that our baby had TGS. If he didn’t have an operation in the first few days of his life then he would soon die. The explanation was a bit of a blur. I remember the consultant saying “The survival chance is about 90%” and my stomach being in my mouth when I realised that my baby might die. People kept telling me what great odds 90% was and I hated them. I wanted to scream “Go and find a road with a 10% chance of getting killed and stand on it for 48 hours”. I also felt like a failure as a mother and angry at myself for not giving my baby a healthy heart.
We were in the process of emigrating from London to Sydney, so suddenly we had to decide whether we could still go ahead with the move on top of everything else. I hated the idea that the people I loved might never meet my baby if he died. In the end we decided we wanted continuity of care with the op and as he grew, so we decided to move anyway.
Alex was born at 6am on Sept 8 2004, I didn’t even get to hold Alex before he was taken away to the NICU where he had a balloon septostomy. On Thursday 16th Sept, when Alex was 8 days old, he had his arterial switch operation, with Dr Peter Grant. As I wheeled the cot across to the children’s hospital Alex opened his big brown eyes and looked right at me. I thought “I hardly know you and I might never see you again”. As he was taken into theatre I didn’t want to let him go. Then followed what I thought was the longest 6 hours of my life.
As we waited outside SCH ICU 6 hours later we were told that the operation had been successful. So successful that they had decided to stitch the wound closed rather than leave room for swelling in his chest. As I cried, the nurse told me “This is the start of the good bit now”. When he came up to the ward, we couldn’t believe how pink Alex looked. Oxygen SATS of 99%. After the 40% we’d been used to it seemed totally weird. We felt so happy. A few hours later we were told “why don’t you get something to eat, he’s doing really well”. When we came back there were a lot of people around his bed. They were looking up drugs in books and redoing calculations. It was obvious something was wrong. Then the doctor in charge said “Mum and Dad leave the room now please”. I had been wrong earlier. The longest 6 hours of my life were definitely during that night.
Alex after his surgery.
I don’t know how long it was before a nurse came out. She said that she had made a promise to herself to explain to us what was going on, as soon as she could leave. Alex’s heart had stopped and he had been given heart massage. They were experimenting with different drugs, but didn’t really know what was causing his heart rate to be so fast and his blood pressure to be so low. I begged “please don’t let him die” and all she could reply was “no-one wants that to happen”.
Alex’s chest wound was re-opened and sometime in the early hours of the morning they were back in enough control for us to be allowed to go in and see him. I remember thinking he looked like Flat Stanley. Totally swollen and puffy and yet with no depth. That night we dozed on and off in chairs next to his bed.
Alex remained stable the next day and by the following morning he had begun to slowly improve. One week later I was finally allowed to hold him again. It was a very emotional moment. I couldn’t stop crying tears of relief and happiness. Then followed another week of desperately hoping he would gain weight and we would be allowed to take him home. And when that finally did happen, the fear of having to live without nurses and monitors and figures.
I can’t thank the staff at SCH and HeartKids enough. Not only for giving us a life with our beautiful boy, but also for the emotional support they gave us while we were there. When we left hospital, we gave gifts to the nurses, including the nurse who had come out to explain what was going on when he had his cardiac arrest. We had a beautiful thank-you card from her in which she had written “…all I ask is that you always remember how precious he is…”.
6 years later, it feels like all that happened to someone else. We are extremely lucky. Not only to have our precious son, but also that we only had to endure a few horror days. When we left hospital we were told Alex had to gain at least 100g a week. In the first week, he just hit target. After that he was gaining 250g a week, with a 400g week once. He hit all his physical milestones appropriately with his peers and really enjoys sport. He even swam his little sister to the side of the pool when her bubble came off last week.
Alex manning the lemonade stall. With all proceeds going to help the ‘sick kids’
Alex has no memory of his early days, but we have shown him photos and he knows how lucky he is. He just loves to take control, and at his brother’s first birthday party, he decided he wanted to run a lemonade stand “for the sick kids in the hospital”. He did a fantastic job of organising the stall, taking care of the money (and drinking lots of soft drink!) and raised $127.20 with practically no help, aged just 5.