My son was born with a hole in his heart. As I hadn’t initially wanted a third child, I often felt he was born with a broken heart. When he was growing inside me I always had a feeling there was something wrong. The doctors examining me would get a funny look on their faces when it came to checking the heartbeat. But I was always told it was nothing to worry about.
Then, when he was born, he came out blue and bruised. We were told he obviously just got stuck on the way out and there was, again, nothing wrong. As he was my third, and otherwise didn’t seem to be ‘different’, I believed them. Though, when I felt his heart beating I did wonder as I swore it didn’t feel quite right. It was as if there was a cog loose in an engine.
When he had his eight week check-up and I was told there was a ‘murmur’, the bottom started to fall out of my world. However, as he seemed a ‘perfectly normal’ baby, they didn’t rush us over to a specialist. Instead, it was explained it appeared he had a hole in his heart and we were to go see the Cardiologist in a weeks’ time. This, naturally, was a week in hell where Google was my enemy and greatest source of information on holes in hearts.
By the time we got to the Cardiologist I was hoping amongst hopes it was a simple hole in the outer muscle and one that would seal itself over time. We weren’t so lucky. My nine week old baby had a doubly committed sub-arterial ventral septal defect. Meaning sooner rather than later he would need surgery.
My life was pretty much going through a lot of negative things at the time. My then employer wasn’t being that helpful or tactful about making me redundant, I had a household to deal with and my two other lovely children to tend to. So this was just some simply marvellous news and made me feel like I had won mother of the year. Note sarcasm.
I was told to go home and act normal, because he appeared to be in no immediate danger. It was better to wait until he was a little older (and bigger) before they sliced him open and fixed his ticker. I was told he should be fine and could live to his nineties with this condition. But, as the hole was right below the valve between the bottom two chambers, the valves could invert at any time and kill him.
So, yes, I fell to pieces after that and spent the next several months constantly watching my son. He slept on me or next to me so I knew he was breathing, each and every chest infection (and he got many as it was a symptom of heart issues) I visited our doctor seeking assurance he was okay. My strong, independent, in control personality became a self-doubting, self-hating, chocolate binging wreck.
Our boy grew and prospered and was only a few weeks behind baby milestones. Nothing concerning, but just more signs he wasn’t getting enough oxygen to keep up.
We had Cardiology visit after visit until the day came we were told he was old enough to be operated on. Pack a bag and they’d send us the travel details. There are no Paediatric Cardiologists in Adelaide where we live, so they usually sent ‘folk like us’ off to Melbourne. But my wonderful sister in law and a doctor in Brisbane pointed out the Paediatric Cardiologists in Brisbane were just as good. Plus we could stay with family and friends and not have to rely on the charity of the Government for the two weeks we’d be there. And so off to Brisbane we went.
We got to see family, he got to meet some of them for the first time and we got to stay with people we knew, loved and were comfortable to be with. Rather than some isolated charity house in a strange city far away from anyone we knew. And it was good to have a shoulder to cry on, and indeed I needed to.
Our son was checked into the hospital, got poked and prodded and got to sit around in a cot for a day without much else happening. We were allowed to take him home the night he turned nine months old and had have him back there the next day for the ‘big show’.
Once we arrived at the hospital I felt so ashamed I had fallen to pieces as there were so many children there with issues far greater than ours. His condition was a simple puncture repair in comparison. There were far braver families there than weak willed me.
The operation roster was running behind schedule the day of his operation and I was so stressed I want to take him and flee when they finally said it was time. They then took my nine month old baby from us, put him to sleep, cut him, cracked open his ribs like a chicken and stopped his heart for two hours.
And, in that time, I was the most at peace I had been in months. I had lunch, I chatted, I sat in a waiting room in a mild daze. I was no longer scared, worried or in fear for my baby. Why? As he was in the one place that would be able to save him if something went wrong. And if they couldn’t, it just wasn’t meant to be. All the time I had been in charge of his care, I would have been helpless to save him. I could now allow myself to get close to him and not be afraid I would lose him. He was now safe and being ‘fixed’.
And fixed he was. His surgery took about two and a half hours; he was then put into PICU (Paediatric Intensive Care Unit) for two days, moved to the Close Observation Ward on the second day. Third day he went to the normal ward and the following day, my birthday, discharged with a full bill of health. It all sounds so easy and casual when said like that. But they were indeed some very long days of my life and ones I honestly hope to never repeat.
We then got a week to recuperate in Caloundra with family, and were joined by my other darling children on Easter Sunday to be a family once more. When we were given the thumbs up to go home, we did.
He had a few more cardiologist appointments and they moved from weekly to monthly to annually. Time moved on, he caught up on all the missing milestones within weeks and there was really no stopping him. In 2014 we were given the all clear. He was about to turn five and no longer considered to have a ‘heart condition’.
This all started in 2009, and took five years to bring the happy ending we desired. I pray others are as lucky with their holey hearted babies.
Posted by Eclectic Mumma, 10th May 2015