Bi-directional Glenn Shunt, CHD, Children's Hospital Westmead, Congenital Heart Disease, Fontan, HLHS, Hypoplastic Left Heart Syndrome, Norwood Procedure, Sano shunt, Single Ventricle Defect, The Heart Centre for Children, VSD
Ted was born with Hypoplastic Left Heart Syndrome. Essentially, half a heart. There is no cure and his treatment is called a 3 staged palliation. Nobody wants to hear “palliative” with regards to their child, nobody.
This means that our little boy needed a series of open heart operations to enable his single ventricle heart to work well enough to sustain his life for as long as it can. After surviving his first open heart surgery shortly after birth we were told he had a 70% chance of making it to 5yrs of age, beyond that nobody knows.
We found out half way through the pregnancy. They encouraged us to terminate our son. We refused. We adored him. We begged for a referral to a cardiologist. We decided to name him Theodore because it means ‘a gift from God.’
What we found out about Theodore’s heart horrified us, but we held tight to the belief that every child is a gift from God and through our tears we tried to focus on the positives. We wondered if he would be like his 3yr old sister and wondered whether we would have him in our lives long enough to find out.
We had read the studies and we saw the pictures, we knew Teddy’s journey would be horrific. We were reasonably prepared to see our tiny baby after a marathon Norwood-Sano surgery at 2 days old. The operation is the most complex of all CHD surgeries it took all day. We weren’t prepared for the complication at 10 days that saw him back in the operating theatre. His little chest had begun to heal but already he was going back in to have a pericardial effusion drained. He had only just been extubated and he was back on the ventilator.
Quite the little soldier he recovered well, but once he was extubated this time it became apparent that he had suffered vocal cord palsy. We were told his voice may or may not return. He was banned from swallowing and for the next few months had to be continuously fed via trans pyloric tube.
At two months of age Teddy faced yet another open heart operation. This time a Bi-directional Glenn Shunt and a Pulmonary Artery Augmentation. Following a cardiac catheter procedure we then had to prepare for the Glenn- the second stage of his palliation. Two weeks earlier Teddy’s beautiful room-mate Keeley had died following the Glenn. We were very scared to hand him over for more surgery as we mourned the loss of another heartbaby. We were still heartbroken after our dear friend Erin lost Pippa to HLHS following the Norwood.
The operation was difficult but Teddy seemed to be doing well in the first 24 hours but then things went downhill and weaning off Nitric Oxide was not successful. We had never felt such terror. It took a lot longer than it should but eventually he was extubated. Unfortunately he was not the same little boy. He didn’t recognize us anymore, wouldn’t smile and just screamed and stared into the distance. We had neurologists examine him and he underwent a lot of tests. Fortunately God blessed us and little Teddy eventually returned to normal after a few very rough weeks.
After many months he finally came home and by his first birthday he no longer had a feeding tube and his life became a lot more normal.
By Ted’s second birthday he was doing a lot of the things other children his age could do. By three our little miracle boy was amazing doctors and delighting loved ones as he prepared to start preschool.
Today he is a chatty little almost-four year old, however the capacity of his single ventricle heart is waning and he is often breathless and blue. He cannot keep up with his pre-school friends and he often cries about having a ‘special heart’ and feeling breathless. It is time for his Fontan surgery. It terrifies me to admit that, but it is time.It has been set for mid- February.
Seeing Teddy do his ‘ninja turtle dance’ makes us very happy. It is these small things that bring us joy these days. There are plenty of sad moments like realising how tragic it is that we get so excited when we read about a person with HLHS making it to their 20’s. As though it is some major achievement to get to 21?!
It is cruel and unfair that we are facing old age without our son, nobody wants to outlive their children. All we can do is pray for advances in medical science so people like Ted can live healthy long lives and that instead of 20 being an achievement, we’d like the average to be closer to 100!
I knew Teddy’s condition was serious, but not quite SO serious. I can only imagine the heartache, worry and stress this has caused you all. I’m sure it’s something you will cover in time, but is there a reason Teddy can’t have a transplant?
Sending you all much love and strength, particularly as the Fontan surgery rapidly approaches.
Hi Kerry! There are a number of reasons heart transplantation isn’t ideal for kids. First up, here in Australia (as opposed to say the US) it is very rare that a paediatric heart becomes available and then if a child does receive one, they are then restricted to only receiving one more in their lifetime. In a paediatric patient a donor heart lasts 5-10yrs only. Another issue is that the antirejection drugs the child needs to take forever often cause certain cancers. Also for a child to receive a heart transplant their lungs need to be functioning well. That’s a very basic response but you get the drift. Xx
I didn’t know about the restrictions on the “life expectancy” of a donor heart nor the restriction on the number of donor hearts. What an untenable situation for you all. xox
I think for an older person with no options a donor heart is good. Ten years for a sixty year old is pretty ok but for a kid… Not great. It is a last resort.
Oh your darling boy. He is amazing. I too knew his condition was serious, but had no idea how serious. I’d also wondered whether a heart transplant was an option. Sending you, Teddy and your beautiful family much love. Hoping and praying for a successful surgery, and a cure. xxxxx
Am following along, in prayer, for peace leading up to the surgery and safety during and after. Please give Teddy a hug from his heart buddy, George in Charleston, SC (IG: @erob77)
Diana Hartog said:
Oh Hun! I had no idea! I pray that Teddy lives a very long & fulfilled life! I cannot imagine the fear you must have felt to hand him over at each surgery! 😦
Carolyn your strength and determination to fight for Teddy the entire way since diagnosis has been amazing. Thank you for sharing your family and Ted’s experience till this point in time. It must be so hard to reflect back on those moments of great uncertainty. I pray every night for your family and Ted. I hope you won’t mind me sharing this blog with another family I know who’s son has the same condition as Ted.