Ventricular Septal Defect: Woody’s story
Charlotte’s little boy Woody was diagnosed with a VSD (Ventricular Septal Defect) during her 20 week pregnancy scan. He is now a happy and thriving 4 year old. This is their story:
We’d had three miscarriages before we finally conceived Woody, so getting to our 12 week scan was a day to celebrate. With our history we were given a consultant for the scan rather than the usual sonographer and that proved fortuitous, as he was the first to spot something wasn’t right. He began to measure the nuchal fold and went quiet. “Sorry, there’s a problem.” The measurement was big and there was a build up of fluid around the baby’s body, both strongly pointing towards Downs Syndrome, a heart condition, or both. We were devastated but I remember thinking “well, if it’s the heart, I’m sure they repair hearts in the womb now, right? Medicine is really advanced! They’ll just fix it!”
We had to wait an agonising four more weeks until it was safe to do an amnio to check for Downs – they told us it was a one in three chance, but it was clear.
So it was on to the 20 week scan to see what else it could be.
I’m a strong believer in knowledge giving you power. With so many uncertainties I remember wanting to find out everything I could before he was born. I wanted to be prepared. A legacy from the shock of suddenly miscarrying those times before I guess. No more surprises.
The 20 week scan was performed by a leading neonatal cardiologist at Queen Charlotte’s. She spotted a Ventricular Septal Defect and tried to reassure us that these holes often close up of their own accord. Our positivity somewhat shot, we tried to focus on getting to the end of the pregnancy, taking it a day at a time. Hoping our baby would be one of those.
The cardiologist invited me to a training seminar to help other doctors spot CHDs. Of the twenty students who scanned me no one else spotted there was a problem. Testament to the skill of our cardiologist. I felt so lucky she’d found it.
At Woody’s birth I was only allowed to push for half an hour as they were worried about putting undue stress on his heart. I also had a team of doctors standing by the ‘business end’. This was all very reassuring. I wanted all the doctors. I was totally convinced he’d come out and drop dead.
But the birth went well and we were sent home and told to come back in 3 weeks once the heart had stabilised.
It’s terrifying taking a fresh baby home from hospital. But taking one home with a CHD and being told to “look out for signs they’re struggling…shortness of breath, blueness, sudden death…” Well, it was totally overwhelming.
At 3 weeks old he was diagnosed with a significant Ventricular Septal Defect, a smaller Atrial Septal Defect and pulmonary stenosis. They couldn’t work out why he wasn’t in complete heart failure. Amazingly his valve was being sucked in to the large hole and was blocking it, meaning he was stable, but he’d need surgery when he was big enough. So began months of regular trips to The Brompton, weekly weigh-ins, diuretics, body-building formulas, many visits to A&E and constant worry while we waited for surgery.
He was 14 months when he finally had his surgery at The Brompton, which went amazingly well. I had months of counselling before as the wait had left me a wreck. I remember feeling very lonely in all the baby classes. My little puffing, tired baby seemed a world apart from the chubby-cheeked babies crawling around the floor and I envied the other mums’ carefree spirits.
Woody is now a thriving 4 year old. His valve is a little leaky but everything else is great. (Touch wood.) I now need to learn to see him as a normal, robust little boy and not the frail baby of before. I’m getting there. Slowly.
We’re so grateful to have had his CHD spotted early. Tiny Tickers is doing an incredible job helping ensure others get the knowledge we were lucky enough to receive. You feel so powerless when you’re told your baby is ill. Getting the right information early can make all the difference.
As a parent, often it’s the only power you have left.
For more information on Ventricular Septal Defect, click here.
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