Being the parent of a child with a congenital heart defect: what does it mean?

By heart parent, Kayleigh, West Midlands.

When you are told your baby has a congenital heart defect (CHD), your mind is consumed with more questions than you’d ever imagine. Will they require surgery? How will this diagnosis impact their development? What will their future look like?

These are just a few of the hundreds of questions running through my mind in that instance. Being diagnosed with a heart defect, whether in utero or post-partum, those questions remain the same and some cannot be answered fully until further investigations are completed. Some questions may never be answered – we just have to ride the wave and find out for ourselves.

My now 17-week-old Hudson, was born mildly premature at 35+5 weeks via emergency Caesarean section. We weren’t aware of any cardiac problems prior to his birth, so this came as a shock to us, as it does to many other parents the world over.

Hudson was diagnosed with a large ventricular septal defect (VSD) and pulmonary valvar stenosis. It was also discovered, at seven days old, that he had a large patent ductus arteriosus (PDA) too.

This turned our worlds upside down and we instantly had many questions. Some of which were answered and we started to imagine what his little life would entail. We foresaw the numerous hospital trips, the frequent echocardiograms and we imagined he would require surgery in his first year, but what we didn’t plan for was the lifestyle which we would become accustomed to. A quality of life restricted to the safety of our home, scared to venture out as we knew with a compromised heart, his immune system was supressed.

Hudson was born while on a family holiday on the Isle of Wight. He spent ten days in the NICU, then was transferred to a hospital closer to home. He spent a further 11 days in hospital, then was discharged home due to his heart conditions being stable enough not to require surgery straight away.

For us and many in our position, being home was so daunting. It’s normal to worry about your newborn in the first few weeks, but with a baby with a CHD its even more worrying. Add a global pandemic into the mix and the anxiety is through the roof.

Any new baby brings visitors, visitors you see in your mind as being riddled with germs they could potentially pass on to your new bundle of joy. Although you love to show off your new addition, in the back of your mind you’re counting down the minutes until they leave.

This bought out a whole new level of stress and anxiety in me. I asked guests to wear masks and wash their hands when in our presence, and even stopped doing the weekly shop in fear of picking something up and bringing it home. My social life took a battering, and up to present day we’ve not ventured very far. I’ve skipped family birthdays and weddings due to the sheer amount of fear that has control of me. I know I’m not alone in feeling this way.

When Hudson was 12 weeks old, my worst fear became a reality…he was admitted to hospital with bronchiolitis, passed onto him we assume by his older brother, who had returned home from school with a cough.

I’m assuming you all know how severe bronchiolitis is to an infant with a compromised heart, and Hudson was no different. He spent three weeks in total in hospital fighting the virus which was RSV positive. He required breathing assistance and there were talks of him being intubated. Thankfully, this never happened.

He’s now home and we had a very different Christmas from the one I imagined when I was pregnant with him. It was Hudson’s first Christmas, but it was spent alone, away from family and friends due to my anxiety of him picking up any winter bugs. There was no Santa visit for him either, as the thought of him sitting that close to a stranger fills me with dread. In fact, the majority of my maternity leave so far has been sat either in a hospital ward, masked up, or confined to my house, scared to even go to the supermarket or take my five-year-old to school.

I’m grieving a normal life. A maternity filled with baby classes, swimming and meeting up with my other mum friends for lunch and a coffee.

This new normal has come as a bit of a shock to my eldest, therefore both he and my partner are trying to live their lives as normally as they can, but they know to be cautious and vigilant around larger groups. I hate that it has to be like this, but it’s the only way to lessen the chances of Hudson being readmitted into hospital.

Motherhood is a lonely place at the best of times but when you’re living with a sick child, it becomes the loneliest place on earth.

Tiny Tickers is here to support heart parents throughout your journey – from diagnosis, to surgery and beyond. Find out how we can help here.