Mack and the Ticker Fixers
14th February - Sweetheart Day
By Emily Bruining, Senior Occupational Therapist
Here’s our little boy. Our early Christmas present, Mack.
When Mack was about 24 weeks on the inside, we were told that he might have a congenital heart defect, a “coarctation of the aorta”. Put simply, it means there’s a blockage in the major outlet pipe from the heart. Coarctations are inherently tricky to diagnose antenatally, because the problems only really become apparent when the heart’s plumbing starts to change after birth. They can range from very mild, going undetected for a long while, to multiple blockages in the aorta resulting in the whole pipe needing replacement.
This meant he could go home a perfectly healthy, unremarkable baby, or he could need heart surgery, or something, somewhere in the middle.
Half of my work week is spent at an aged care facility. Before Mack was born, my lovely old friends delighted in talking about the baby to come, reminiscing on nappies boiled and matinee jackets knitted. Every morning, I would be asked (many times!) whether we wanted a boy or a girl. “Oh, we don’t mind” I would say. “That’s right, so long as they’re healthy” they would reply.
So long as they’re healthy. What a little heartbreak (excusing the pun), knowing that might not be the case.
We were reminded that there was hope inherent in the uncertainty and that things might all be OK. But it didn’t feel hopeful. We didn’t want to overreact, didn’t want to tell people, in case it was nothing, but then, how did we go about planning for the worst-case scenario if it was something? We owe a debt of thanks to our obstetric team at St John of God Hospital. I cannot adequately explain what their clear communication, continuity of care, and advocacy meant to me in the face of a difficult and uncertain diagnosis.
As it happened, the morning after Mack was born it became apparent that his condition was relatively critical when they couldn’t find pulses in his legs, and he packed off to Perth Children’s Hospital. Mack was admitted into an enormous, dim room all on his own, a tiny little bundle surrounded by teams of doctors and monitors. Despite the fact it meant we were looking at the worst-case scenario, the day we found out he had his surgery booked was a very good day. It meant that we knew the full story, that we had a plan, and mercifully in his case, that the issue would be largely resolved.
My heart goes out to every parent who sits in the Neonatal Intensive Care Unit. For every parent who knows a cuddle that can only be half a metre from the bed, that takes 10 minutes and two nurses to arrange because of all the leads and lines. When all you can do to comfort your sad, confused little human is sing to him and stroke the only “untubed” part of his head. To tell him, over and over, that it all gets better from here. No feeding. No rocking. No baths. No grandparents, or sisters, or friends, to visit.
The cardiology team and surgery teams at PCH were extraordinary. Their expertise, communication and planning (over Christmas, no less!) left us secure in the knowledge that Mack was in the best hands. In the end, the operation to chop out the blockage and reattach the two ends (resection via a thoracotomy) was completed when he was 6 days old and took all of 19 minutes. It was extraordinary. They are extraordinary. Every one of the health professionals who cared for our boy. We will spend a lifetime telling him about them.
Mack is now home, recovering beautifully, and gracefully enduring the affections of his one-year-old sister. She seems to really think Mack would enjoy a banana and a ball game. He seems terrified of her.
While we will be paying intermittent visits to the cardiologist for a long time to come, thanks entirely to the health professionals at PCH and SJOG, there is no reason Mack can’t be a scuba diver, mountain climber, camel wrangler, or whatever else takes his fancy (perhaps limited only by a mother who will gently, but if necessary, remind him that he’s put her through enough stress for one lifetime!).
Congenital Heart Disease is one of the leading killers of infants in Australia, and up to 3000 children will be diagnosed with CHD each year. Babies with CHD are more likely to need additional care and support with learning and development as they get older. Many will need ongoing medical and surgical interventions.
There were people in the antenatal imaging waiting room whose appointments were longer and more frequent. Whose choices were harder. Whose journeys were far longer than ours, and in some cases, tragically shorter.
I realise that my lovely friends in the aged care home only wished for him to be born healthy because when their babies were born, if they were born with a heart defect- if they were born “not healthy”- their options were sadly far more limited.
Sweetheart Day (coinciding with International Congenital Heart Defect Awareness Day) is on 14 February. If you are looking for a meaningful and different way to celebrate Valentine’s day, we would love your support in raising funds for Sweethear Day and Heart Kids in celebration of Mack. You can show your support here . Heart Kids is a tremendous organisation that provides ongoing support for families living with congenital and childhood heart disease. From one who’s been there, know that your support for them is deeply appreciated by those they help.