My name is Janelle and when I was one day old, I was diagnosed with Congenital Heart Disease. My heart had formed with the defects 'Transposition of the Great Arteries' and a Ventricular Septal Defect (hole in my heart). Transposition of the great arteries (TGA) means the two arteries that carry blood from the heart to the lungs and body aren’t connected where they should be, they're reversed.
At 4-weeks of age I was showing signs of heart failure and was flown from Perth to Melbourne for urgent open-heart surgery. 30+ years on I continue to go for regular check-ups to monitor 3 leaking valves (a common side effect of TGA surgery) but despite all of this, my heart remains incredibly strong.
I wanted you to hear first hand from my Mum, this is her account of the early days of my journey.
My Daughter
My second pregnancy was quite normal, I thought, and the labour seemed a bit easier and quite a bit quicker than with Janelle’s older sister, so everything they tell you to expect. At this stage, I was feeling pretty lucky, relieved, and blessed to have my second child - another girl to cuddle and gaze over - and it wasn’t until later, as time ticked by on that first day, that I started to feel some concern.
She couldn’t seem to suck to feed (it became obvious later on that she was just too weak) and the colour of her skin was very strange - beyond birth trauma strange. Eventually, we were told that everything wasn’t good at all and we had the first of so many horrific conversations with the doctors about her CHD diagnosis and the recommended surgery to follow – pretty much one-sided conversations, because you’re numb with shock, dry-mouthed from all the shed tears, confused by all the medical terminology, doubtful that you’re really hearing and understanding a single thing, but nonetheless trying to keep up. And then, as days go by, you’re so over-whelmed, so sleep deprived, you can go into a headspace where you try to convince yourself it’s all a crazy mistake and none of this is real. But then you see your beautiful baby in an incubator attached to endless leads connected to flashing, beeping machines, unconscious from drugs, looking so unwell with that awful pasty, cold, lifeless complexion and out of arms reach. You can’t hold her in your arms, you can’t kiss away the pain, you can’t breathe life back into her. I felt absolutely useless to do anything.
After Janelle’s diagnosis, the doctors had decided the best option would be to monitor her closely and delay the operation for as long as possible, which meant we stayed in the hospital. They reasoned that the older and bigger she was, the better her fragile heart and body would cope with surgery. Everything had been going well until, at 4 weeks and 3 days, I started to notice small changes, like her declining alertness. I have to admit I questioned my instincts then and wondered if I was worrying unnecessarily, but my darling baby was in heart failure and needed to be intubated and transferred urgently to Melbourne for surgery that could no longer wait. The hospital staff were amazing and took care of every last detail; they knew what needed to be done and organised everything. The next day we were on a plane heading for The Royal Children’s Hospital and Dr Roger Mee.
We landed in Melbourne late on a day pouring with rain and Janelle’s operation was scheduled for the following morning. There was so much going on and, needless to say, it was another sleepless night. The day of her surgery was a day of anxious waiting, but a day to be patient, to look for distractions, and to try to stay as positive as possible. We were given a small room to wait away the hours and I was always checking a clock on the wall. I was so damned focused on that clock that when Dr. Mee unexpectantly appeared I’m sure in that moment my own heart stopped. It was so much quicker than we’d been told to expect, and I immediately wanted to run. If there’d been a back door, I would have been gone rather than stay to hear what I was so terrified he was going to say. It was such indescribable relief when he told us that things had gone well and the transposition was done. Other issues were either repaired or left for Janelle’s own body’s healing and the prognosis was good. For the first time in forever, I was crying with absolute joy.
Once we returned to Perth and Janelle could eventually leave her hospital cot and come home, a new routine of post-surgery care began … medications, check-up appointments with her cardiologist and doctors, regular ultrasounds, and ECGs. Over the years, there have been a few episodes that were a rare but shocking reminder of the fact that her heart is not a completely normally functioning heart and is something fragile and precious. When my daughter now gets her own results following an echo/test she often says that the doctor reviewing these results will say something like “well, it’s not normal, but it’s probably normal for you” and we can laugh.
To everyone who is following Janelle’s Trek for Heartkids, her birth story has always been private for me until now. I’m sharing in support of the walk (ha! Trek) that my daughters Janelle and Darian will be doing very soon. I’m so proud that they’re committed to doing this to raise money for other families who have, or may one day have, their own experiences with CHD. Heartkids has evolved a lot since 1988 and today is able to provide so much strength and support to families when it’s absolutely needed the most.
My family and I understand first-hand the importance of the HeartKids organisation. It is the only national charity dedicated to supporting children, teens and adults affected by congenital heart disease all across Australia. They also fund research into the causes, treatment and management of congenital heart disease.
To show our appreciation for HeatKids, in December, my sister Darian and I will be challenging ourselves to trek 240km along the 'Great North Walk' from Sydney to Newcastle through Ku-ring-gai Chase National Park, Brisbane Water National Park and Watagan State Forest. We will be pushing the limits of our abilities, both physically and mentally.
Our trek will start on 27th December 2020. Our goal is to raise $10,000 in donations with 100% of all funds raised going to HeartKids Australia.
Whether you donate a lot or a little, every bit helps. Please like and share our page and follow us at #janellestrekforheartkids.