Harrison tragically passed away from an undetected heart defect when he was 32 days old. His mum, Katie, shares their story:
I really wish I was about to write about how my son Harrison’s 8mm VSD (hole in the heart) was discovered, and about the operation and recovery that followed. But that isn’t Harrison’s story. 32 days after he was born, Harrison died suddenly. Seven months later, I would find out he had an undiagnosed congenital heart defect and that was the cause of his death.
Harrison was born on 18th December 2022. He was a very healthy 8lb 9oz. I was 40 +1 and it was an easy, straightforward pregnancy. All of his scans were fine and all my appointments were positive.
After a very quick labour, I immediately began to try to feed Harrison. He was being very fussy and not really taking to his bottle. I tried, his dad tried and then the midwives in the hospital tried to take over so we could be discharged.
A paediatrician came to examine Harrison, and she heard what she described as ‘grunting’. I’d never even heard of this term before. We heard the sounds he was making, but had been assured by the midwife who delivered him, that it was ‘mucous from a quick delivery’. As a result of this, we were kept in overnight. A blood gas test was done and there was no sign of an infection. There seemed to be no other cause for concern, no more tests and we were discharged.
We got to take our baby boy home. We got to introduce him to his big sister, Harriet. It was a week before Christmas and my heart was so full. The grunting continued and, although it really did bother me, I put my trust in the medical professionals who didn’t seem to be alarmed and who didn’t tell me it was unusual if it continued.
We also felt his breathing was rapid, but he had been seen several times by various health professionals (doctors, midwives and health visitors) and there was no cause for concern.
His feeding then became worse. He started with a shriek as soon as he would take his bottle and we began a daily battle of stop-start feeding. It was so upsetting and distressing and I was so frustrated for him.
After trying different techniques on the advice of my midwife, I had an appointment on the 3rd January to see the GP. Harrison was around two weeks old at that point. The GP took observations and, again, saw no cause for concern. “It could be colic, it could be reflux,” was his diagnosis. He prescribed Carobel (a formula thickener). It didn’t work. Nothing worked.
Throughout Harrison’s life, I tried three formulas. Two thickeners. Three teats and three different bottles. I tried different feeding positions, different timings and I fed him by ounces, not by time. I became consumed with feeding, reflux and ensuring he was putting on weight. Which surprisingly he was. I cried so many nights, trying to feed my little boy. Watching him so frustrated and breathless from working so hard to try and take his milk. It makes me feel sick to now know the reality of what was happening.
I cannot bring myself to fully share what happened to Harrison on the evening he died. It is too traumatic and painful for me to begin to describe and to share publicly. What I will say is, on the day he died, his feeding was worse than usual. He was taking less than an oz per feed, which is nowhere near what a baby of his age should have been having.
He was unsettled. I was concerned. I contacted the GP. The receptionist told me that the doctor would give me a call. He never did. I phoned back three times that day and never once spoke to the GP. I was never given the opportunity for him to be observed. I reached out to other medical professionals, who never got back in touch or I was told ring back tomorrow for a feeding referral. I was offered another prescription for reflux. I felt helpless.
Harrison’s heart stopped that night. My world fell apart.
The reason I wanted to share Harrison’s story is because I feel like I’ve read a lot of stories on Tiny Tickers with recurring themes. Symptoms that are normalised by medical professionals. Mothers who are made to feel like they don’t know best and feel like they are failing.
Harrison displayed two of the most common signs of a heart defect from the second he was born. Yet he was tested for an infection and then the tests stopped. His saturations presented fine. Why was another form of test not carried out?
Harrison’s heart was three times the size it should have been for a baby of his age when he died. Yet a murmur was never detected. Because again, this it isn’t typical to hear before six weeks. So, why are different tests not done that can detect this earlier? I have since been told, ‘it’s not typical a baby will die of a heart defect before it is detected’.
Harrison didn’t make it to his six week check. He didn’t get that chance for it to be detected. Does unusual mean that it never happens? Because it did. To my son. Does it mean babies whose heart defects don’t get detected at the anomaly scan should just suffer for six weeks until it is detected? Should we be taking the risk that they may make it to six weeks for it to be discovered? Even at the detriment of the health of the baby and the mental health of the parents?
Symptoms should not be normalised by any medical professional unless EVERY possibility is discounted.
Tests that detect congenital heart defects must be made available from birth, instead of relying on tests that may or may not show a defect is present. The aim should be to detect as early as possible. Not wait for six weeks and hope for the best.
Most importantly, a baby’s health should not need to become critical or fatal before action is taken to discover or treat a congenital heart defect.
I miss Harrison more than I could ever put into words. It’s a daily unbearable pain. I wonder what my newborn would look like now, what his milestones would have been, about his relationship with his sister, how they would have grown up together and what his persona would have been. Who would he have become?
An undetected congenital heart defect robbed us of that chance.
A defect that was operable. That if diagnosed early enough would have given him the chance to be here today.
This is why it’s imperative that a charity like Tiny Tickers exists. It’s incredibly crucial in spreading awareness, to educate and to encourage some much needed changes in a very flawed system.
Harrison Thomas Clayton 18.12.22 – 19.01.23