The world looks at Sam, and sees a child with an incomplete heart.
God looks at Sam, and sees a child with a piece of His own heart.
I would like to introduce you to our little boy Sam, who was born with half a heart.
Sam was diagnosed with Hypoplastic Left Heart Syndrome while he was snugly tucked away in my belly at 20 weeks gestation. The time surrounding Sam’s diagnosis and birth was one of both tremendous heartache and great blessing. At the routine 20 week ultrasound the heart condition was detected, and so followed a week or so of appointments and diagnosis. At one point we were asked if we had considered terminating Sam. When we refused, the other options of palliative care and surgery were offered to us. The surgery option was chosen and we learned that we would need to move to Melbourne for about 5 months for both the birth and Sam’s required surgeries. We had great assurance from God that we were doing the right thing and he spoke to us about Sam’s healing and the great plans he has for Sam’s life.
In August 2008, we locked up our home in sunny QLD, and relocated to Melbourne to wait for the arrival of Sam. Sam David Watson was born via caesarean on the 30th September 2008. He arrived into a room full of no less than 20 medical professionals, all there to make sure he got off to a flying start. He looked absolutely perfect; you would never have known his heart was incomplete. The only sign was the blue/black soles of his feet. I got to hold Sam all wrapped up for no more than 5 mins when he was whisked away to the Special Care Nursery. The next time I got to see Sam he was all strapped into the special cot to go for his ride in the NETS ambulance to the Royal Children’s Hospital. My heart was broken as he left. We missed so many sweet moments that mothers and babies are meant to have when they arrive into the world. It broke my heart to watch him leave and not be able to follow.
Sam’s fist surgery was less than 72 hours after his birth. The Norwood procedure involved creating a shunt between the pulmonary artery and the aorta so the right side of Sam’s heart could supply blood to both his body and his lungs. Sam recovered really well from his first surgery with no complications. I remember when I first saw Sam after his open heart surgery; I could clearly see his heart beating in his chest with my naked eye. His chest was still open, covered only by a large plastic adhesive. What a marvel of creation the human body is.
After this first surgery, Sam’s biggest struggle was to gain weight and he had a nasogastric tube for feeding. He was just too weak to suck either from the breast or bottle. And so I expressed milk for Sam for the first 4 months of his life. It was a way that I could bond with Sam and I felt like I was helping him, giving him a good start with all of the antibodies.
We stayed in a unit across from the hospital in between surgeries and had regular check ups at the hospital. We had quite a few stays in the hospital in between surgeries that had nothing to do with Sams’ heart. The battle with feeding was an ongoing drama. Sam brought up almost half of his feed each time. And problems with re hydration and weight gain were always the cause of hospital visits. Amazingly whenever Sam had the tube removed he kept all of his milk down, we used to syringe it into his mouth. But the tube had to remain between surgeries.
We spent Christmas away from home and rejoiced in the fact that although we were far from family and friends, God had blessed us with another little boy. And so our eldest boy Jack who was 2, and his little brother Sam who was now 3 months, began to bond as we shard this first Christmas together. We hoped it to be the first of many to come.
Sam had an MRI to prepare for his second surgery which was due at 4 months of age. This was to further help the surgeons to plan the best way to do Sam’s next procedure the BCPS (Bi-directional Cavo Pulmonary Shunt). This surgery was to make sure
that enough blood got to the pulmonary arteries, those associated with lung function. Sam was also blessed with another care free recovery from this surgery; they even kept us in an extra day because they didn’t want to send Sam so early after open heart surgery! What a little champ.
About a week after Sam’s release from hospital we got to take our little Sam home to Qld. It was such an exciting and victorious occasion. After 5 long months we were finally home. A few days after being home, Sam miraculously started drinking from a bottle. Goodbye to the dreaded nasogastric tube! If his chest was covered, no one could even tell that Sam was living on half a heart.
At the age of 1, Sam suffered a stroke, causing his left arm to hang and flop at his side. He just woke up one morning not being able to move it. I rushed him to emergency, praying all of the way. As we arrived in emergency, his arm started to twitch rhythmically. Only 3 hours later, full strength had returned to his arm. It was a miracle! When the doctors performed an MRI, they found that Sam had a blood clot in his brain that was no longer there, but had left some damage. They couldn’t believe that he was moving his arm. Teams of doctors kept coming to check on him and marveled at how quickly he had recovered. Sam is now on Warfarin to stop any further blood clots and since that event he has had no further problems. It has not affected his development in any way. He has reached all milestones for his age.
The doctors tell us that Sam will need further surgery between the ages of 3 and 5 to assist his heart, a procedure known as the Fontan. We still believe God can choose to heal his heart at any time. Each time Sam has an ultrasound to check his heart function, something has improved.
However, right now we live life to the full, cherishing each day. Which one of us is guaranteed 80 years of life anyway? Imagine how amazing life would be if we lived each day as if it were our last. We have been blessed by our journey with Sam and with God, because we have learned what is important and how to make it count. I will leave you with the poem I penned for Sam in celebration of his first birthday.
If Sam could speak...
They said I wouldn’t make it,
It was best to let me go,
But Mum and Dad knew better,
God had told them so.
And so I sit before you,
And smile as I turn 1.
Look out world,
You almost lost
A precious, happy son.
So as I eat my cake
And share a laugh with you,
Reflect on what has happened
And what is still to do.
Live for today and make it count…
Is my advice to you,
Fix your eye upon the goal
And fight to see it through.
Fear’s not in my future,
I’m a warrior through and through.
How can I fall when God holds me?
And I have friends like you.