With a handful of Cheerios clutched in his tiny fist, Robbie Thompson giggles as he shoves them into his mouth, then spits some out in his hand to offer his dad. It’s a small gesture, but one that fills Robbie’s dad with heartfelt cheer, not to mention a deep sense of relief. Only five weeks ago his 19-month old son lay dying in hospital.
The Courtenay boy was on life support waiting for a heart transplant. He was so weak; he couldn’t even lift his head. He was fed via a tube that went directly into his tummy. Today, the feeding tube is gone and Robbie, scrappy and filled with a kind of manic energy, is eating everything he can get his hands on. Robbie’s favorite foods have fast become fruit, granola bars, grilled cheese sandwiches and juice.
It’s hard to imagine this robust child came close to dying several times over with seven episodes of heart failure and bacteria and viral infections.
“We’ve been through hell and back again, so our lows were really low and our highs are so high that we really know what joy is, and this is it,” said his dad, Ron.
Robbie’s parents waited an agonizing ten and one half months for a transplant. He was discharged from hospital almost three weeks ago and his recovery has been remarkable.
While Robbie’s story ends happily, there are many more kids out there who don’t survive. The statistics are sobering: 30% of children in Canada die while waiting for transplants.
“It’s such a miracle because, if you had seen Robbie before the transplant, it’s like night and day. He used to nap four times a day and now we’re lucky if we can get him down for half an hour because he’s so full of energy” Ron said as Robbie sits on top of his dad’s foot hugging his leg as he tries to walk. “We never would have thought the progress would be so quick and the improvement would be so far in just four weeks since the transplant”
Robbie used to throw up 15 times a day. He was miserable and battling two infections just before the new heart became available. His mother Susan spent 165 nights in a bedside vigil at Sick Kids when Robbie was readmitted to hospital peppered with infections and heart failure. Ron and Susan spent every ounce of energy staying upbeat, keeping Robbie entertained, and out of critical care while waiting for a new heart. If he became too sick, he would have been taken off the list as a potential recipient.
Susan and Ron have been by Robbie’s side since last June. They’ve dug deep into their reserve to maintain their health and hope throughout the waiting period, sleeping an average of four hours a night. Ron said they could not have gotten by without the support of friends and funding from the David Foster Foundation.
Robbie still faces several challenges. He’s at risk of picking up infections due to the suppression of his immune system, possible pulmonary cardiac disease, the potential risk of rejection of the new heart. Robbie’s neck is perpetually cocked to his right side. This is a result of his muscle being shorter on the right side because his heart is so huge, it pushed his ribs out of place. He’s undergoing physiotherapy to cope with the problem, which will correct itself as he grows older and larger.
“We’re just so lucky, we really are, because not every family gets an organ and gets this type of quick recovery,” said Ron. Ron and Susan say not a day goes by that they don’t pray for the family who gave their child’s organs so Robbie could live.
“I think we’re very blessed and lucky people. We’re almost in disbelief that he’s doing so great.
“The sad thing about transplants is that a baby had to die to give Robbie life” said Susan. “We’re going to take really, really, good care of that baby’s heart, not only for Robbie’s sake, but because somebody cared enough, thought enough about people like us, and their actions made all the difference in our lives, and we want people to know that”