We knew something was wrong when we got abnormal results at our 1st trimester ultrasound but we didn't know it was his heart until Jen was 17 weeks. After some very detailed testing McMaster hospital told us it was Hypoplastic Left Heart Syndrome and referred us to the team at SickKids so we could start making a plan for Grady's arrival.
They told us Grady was going to need at least 3 separate open heart surgeries that would effectively change the entire design of his heart and bypass the left side completely. They warned us that it was very dangerous, that his first surgery could be as soon as a couple days after he was born and that we could still lose him even if we did all the surgeries.
They tried very hard to make sure that we knew all the risks. It was really hard to hear them tell us all the things that could go wrong, it's hard to listen to someone tell you that if they don't do these operations you won't get to keep your baby.
Grady was born on November 14th, 2009 at Mount Sinai Hospital in Toronto. It took less than an hour for them to get Grady over to SickKids and hooked up to the monitors. He had his first operation when he was only 4 days old. That was the first time he surprised the doctors by reacting strangely to the anesthetic and it was the first time we nearly lost him. He had trouble recovering from the surgery and needed an additional operation to help him get over the hump. He was 2 months old by the time he could come home.
We had weekly appointments with the single ventricle team and his Cardiologist, which gradually turned into biweekly appointments. His time at home (and ours!) was filled with a busy structured routine that was managed by his Mom and followed by me. Grady had a feeding tube because eating took more energy than he had and we needed him to get a certain number of calories into his body each day. Our nutritionist at SickKids gave us a scale so that we could weigh him and was in contact with us every day to hear the results and offer ideas for tweaking his diet to get the best results. It's scary taking care of a baby like Grady because so many things could go very wrong very quickly so it was really nice to have several people we could talk to if we suspected something might be happening.
When Grady came home he needed to eat every 3 hours (which is pretty normal for a small baby) but it took an hour for that food to go in, 10min to prepare it before he could start eating. We were also encouraged to try bottle feeding him for about 20min before we went to tube so that he wouldn't forget how to suck. He had several medications that were given at different times during the day and a blood thinner that was given by needle in the morning and at night. We had an occupational therapist who visited twice a week to monitor his motor skills and help us play catch up…he did spend quite a while in bed in the beginning and we really wanted to make sure that he had made up for it before the second surgery came. She gave us exercises that we could do with him and games that would encourage him to spend time on his tummy and grab at his toys.
By Easter he was doing great! He was sitting up by himself, laughing, holding onto his toys, blowing raspberries, splashing in the tub and pulling Mum's hair…we were so proud! He was gaining lots of weight and we had just been given the OK to switch to feeding him every 4 hours. What a relief…that extra bit of sleep was heaven! He had some acid reflux on Easter Monday so we called the hospital on Tuesday expecting to adjust his reflux meds but found ourselves being asked to come back to the hospital for a check up "just in case".
We were admitted, and spent the next week in isolation making sure that he didn't have any kind of virus before they operated. That's right, the reflux turned out to be an indicator that he'd outgrown his current 'arrangement' and he needed to have the next surgery. On April 23rd he had his Second Stage Surgery, once again there were complications due to his special anatomy (Grady had bilateral superior vena cava's, one on the right side of his heart just like everyone else and also one on the left side. That made things quite a bit more complicated for the surgeon). It was a very bad complication and for the next 2 weeks the nurses and doctors did everything they could think of (which is no small thing) to save him but we just couldn't get him back. It was a very helpless feeling, there was a constant stream of teams of surgeons and specialists coming in and out of the room, somedays he had 2 nurses of his own monitoring everything that can be measured in a person and all we could do was watch, try to follow what they were saying, try not to keep begging them to fix him and thank them for their efforts. The nurses checked on him on their days off and the surgeon called every half hour for most of the night after his last surgery. It actually got to the point where it just felt very inadequate to watch how hard they were working for Grady and only have a "thank you" to give in return.
On May 11th Grady passed away in his mothers arms.
His funeral was lovely. Almost all of his nurses drove the hour long trip to be there with us because they had become his family and they loved him too. It speaks volumes about the quality of care in an institution when "care" has an emotional definition rather than a clinical one.
It feels like they're just so close to saving all the babies like Grady…if you thought there was a way for you to save someone else from losing their baby what would you do?
Jen and I would like to thank you for taking the time to learn about Grady. We'd like to thank you for giving us someone to tell his story too and we'd like to thank you from the bottom of our hearts if you've decided (like us) to help SickKids continue to find ways to save our children.
Jen and Kevin.