Úna’s ventricular septal defect (VSD) wasn’t detected until she was nine weeks old, and dangerously ill. Her dad, Malachey, tells their harrowing story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Úna was born on the 7th October 2021, weighing an average 6lbs 8oz. She was our first child and, as with so many of these cases I’ve read, initially, nothing appeared abnormal during pregnancy or after the birth.
We held her, dressed her and fed her in the hospital. At the time, we were both elated with this new life that was ours. She was born early in the morning on the 7th and, before we knew it, we were on our way home. As a family, we’d temporarily relocated to Scotland for the year, so were a long way from friends and family in England.
As I try to assemble this story, I flick through photos on my phone to remember times, places and dates. It consumes me to now realise how much Úna was struggling to thrive in the first nine weeks of her life. She was harbouring a large ventricular septal defect (VSD – hole in the heart).
The VSD itself was 9mm in diameter and was causing the high-pressure ventricle in her heart to push blood into the low-pressure ventricle – known as shunting between oxygen-rich blood and oxygen-poor blood. As a result, excess blood saturated her lungs, causing shortness of breath. Her heart and lungs had to work harder to keep her alive. This shortness of breath meant that Úna lacked the energy to drink from a bottle. For weeks we recorded her feeding – 5ml, 10ml, 12ml. Nothing more. This was far less than a newborn should be consuming and we knew something must have been wrong. The reality was, she was choosing breathing over feeding – day after day.
I went back to work after two weeks. We visited the GP multiple times, but there would be no resolution. We would talk on the phone or text all the time after I went back to work. The conversation would ultimately be one of two things, “What did the doctor say?” or “How much has she drank?” By the time I was home in the evening, Úna would be asleep.
It felt like we’d accomplished something if we could get her to drink over 10ml. She didn’t cry much – unless you tried to feed her that is. As I said, Úna was a regular at the GP – the frustration of not being able to feed your own baby and the doctor ultimately saying there was ‘nothing wrong’. Erin used to blame herself for it. “They’ve said it’s oral thrush this time,” or “They’re now saying it’s colic.”
It wasn’t until the 9th December, some nine weeks after her birth and what must have been the 10-15th time we visited the GP, that a different doctor saw her, thank God. When I say thank God, I mean it – her tiny body couldn’t have sustained this silent suffering for much longer. I’ve read stories of other children who followed the exact same path as Úna, but unfortunately didn’t make it.
Within a few minutes, the doctor listened to her chest and observed the audible shunting from blood being pushed through the VSD. I’m told a VSD sounds like rushing water through a stethoscope. As her VSD was so large the audible turbulence through the stethoscope was loud.
Úna was transferred to the local hospital immediately. Erin called me at work. “Something’s wrong with her heart – get here”.
Within the next 24 hours words like “heart failure” and “open heart surgery” were common to us. By the next day, Úna was transferred across Scotland to a children’s hospital. I remember walking in to the paediatric cardiac ward and watching the nurse lift her out of her pushchair. I won’t forget his words: “She is a very poorly baby”.
Úna had a nasal gastric (NG) tube fitted through her nose to allow her to feed passively. In a way it was a relief, as we knew she could feed properly. Úna was fed on fortified milk for nearly two weeks before surgery, allowing her to gain weight and giving her the best chance to recover after surgery.
On the 22nd December, I laid her on a bed and watched her be put to sleep. Her chest was opened and a pulmonary artery (PA) band was fitted to regulate the blood flow between her lungs. She was just under 11 weeks old and weighed the same as a newborn, having only gained 1lb from birth (7lbs 8oz). This surgery wouldn’t fix the problem, but it would allow her to regulate and control her own breathing and allow her heart to stop working overtime. Ultimately, she was too small for open heart surgery to close the hole in one go. The method of ‘banding’ was the safest route.
Úna was in PICU (paediatric intensive care) for 10 days. Following this she was released back on to the HDU (high dependency unit). After five weeks in hospital, Úna was discharged with the PA banding and a NG tube through her nose.
On the Doctors orders, we fed her every three hours via the NG tube with fortified milk. Oddly, we took great pleasure in this, as she was feeding and growing at what appeared to be a staggering rate – relatively speaking. Her NG tube was removed four months later by a particularly strict nurse during a consultation – I suppose she must have been alarmed at the size Úna was now, compared to pre-surgery.
Over the next 15 months Úna grew and thrived quite remarkably, living the life of a seemingly normal toddler. We took her to various consultations to discuss the options to close the hole in her heart once and for all.
We were told that a heart bypass would likely be required in order to close the VSD due to its position in the heart. I think that ‘knowing’ an operation of this nature is planned is actually harder than the short-term, shell-shock planning that was done before to save her life.
Coming to terms with re-opening her chest and stopping her heart at some point in the future was tough for us both – especially as Úna got older and begun to develop as a character.
Time moved on and we relocated close to London. As a result, our consultant changed. This didn’t really matter, as the paediatric cardiac field is so close-knit and all the specialists seem to know one another, irrespective of location. As she grew and developed, the professional opinion on her surgery options altered. We were offered a key-hole option, allowing a specialist surgeon to a fit a ‘device’ over the VSD, patching it for want of a better word.
So, at the age of 19 months, Úna had her second operation. Her hole was closed in a matter of hours, routing medical devices through her groin and neck to reach her heart. Due to the nature of the operation she spent no time in PICU and was discharged a day later – remarkably with the hole closed.
Úna has not long celebrated her second birthday, her fortitude and resilience is remarkable, just like all the other boys and girls that go through such events. She is healthy and has overcome this early trauma in her life. She has a small residual shunt on her heart and some localised scarring on her pulmonary artery that may need a small key-hole operation in the future to balloon to a normal size.
The work done by the cardiac professionals, along with the support of the Ronald McDonald charity, are nothing short of astounding. Tiny Tickers is a charity that we support and continue to support in the hope that stories like Úna’s can be avoided in the future.
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