A Bitter Sweet Goodbye at Sick Kids Hospital

Bitter sweet:  After 18 years, 3 new and risky heart surgeries, 3 pacemaker replacements, and countless ‘tune-ups’,  today was Nathaniel’s  last visit to the amazing Sick Kids Hospital.  He “graduates” to Toronto General but it will be hard to match the superb care we received here.  As a 5 day old baby he was flown from KGH to Sick Kids in a January blizzard.  It took him 9 hours to get there.  Since the plane and helicopter couldn’t land, they had to take him by ambulance. When we arrived in Toronto, we were given 3 options:  a heart transplant, 3 risky surgeries or let him go.  We chose the surgical option which had a high mortality rate and later heard that he was “one of those kids we didn’t think would make it”. The weather on the night of his first surgery was so bad that they put the entire surgical team up in a nearby hospital.  The surgeon was there the entire day and through the night treating a very tenuous baby.  That level of care would foreshadow the quality and dedication of those at the hospital for our entire time.  We’ve been lucky to have had the same cardiologist, the uber competent, caring and unflappable Dr. Jennifer Russell  throughout our journey who, when we began, was just starting out her career as a cardiology fellow. Both she and Christine Chiu-man, the pacemaker tech, have endured my endless questions with patience and good humour.

The cardiac floor — 4D — is a hard place to be for any length of time.  We’ve seen friends thrive and others sadly not make it through. We’ve celebrated Easter in the hallway when the nurses turned a blind eye to the table we set up with our take-out feast complete with ‘grape juice’ we smuggled in.  We’ve had countless friends and family bring us food and keep us company during our months-long stays.  And throughout it all we’ve been grateful.

Nathaniel, post-Fontan not quite sure of the clown.
Nathaniel, post-Fontan not quite sure of the clown.

Nathaniel has wowed the doctors along the way. In cardiac failure as a three year old at 2 AM, he told the doctors “it’s time to wake up because my heart said so” immediately after getting his first external pacemaker hooked up.  As an 8 year old, he told jokes to the surgeons as he lay on the OR table just before going under.

It’s a place that family-centred care is not just a buzzword.  In hindsight I am impressed that no one laughed when during  surgical rounds I shared my medline lit review on different surgical techniques used in the Fontan surgery and asked the surgical fellow to defend his proposed approach (making reference to the literature, of course!).  Or when I pleaded with the surgical team that Nathaniel had chylothorax.  The surgeon, Dr Glen van Arsdell, ever the empiricist, asked me to explain why I thought so. Five minutes later after making my case, he was rushed to ICU where he was treated for it immediately.

Surgical drawing, Dr. Konstantinov.
Cool surgical drawing, Dr. Konstantinov.

I’m not one to gush about institutions but The Hospital For Sick Children is really a jewel in our health care crown. It is deeply research intensive, innovative and multicultural in ways that frankly restore my faith in humanity.  Doctors from all parts of the world are  blind to nationalist, ideological or linguistic differences that might be evident in other contexts.  The unrelenting drive for quality patient care restores my faith in our health care system and reminds me how much children, especially those of us who are lucky to live in Canada,  are hostage to fortune.mo-dog

It’s bitter sweet because while we are thrilled Nathaniel has survived and thrived, for 18 years we have taken comfort in returning to the place where we knew he would be cared for.  Anyone who has struggled with a child with a complex health condition knows exactly what I’m talking about.  We won’t ever be able to repay the psychological and real debt from Sick Kids and as we left today a part of me thought that while this is another day in their work it was a pretty profound one in ours.

8 Responses to “A Bitter Sweet Goodbye at Sick Kids Hospital”

  1. Many years ago i had the privilege of doing some work for Sick Kids and being introduced to this amazing place. It is in fact the jewel of hospitals in this country. The staff are amazing, the environment is amazing and so conducive to recovery for kids……nothing can be said but this institution needs to remain as # 1 as it can be…..

  2. What a wonderful reminiscence, which I would wish upon no one. Hoping Nathaniel enjoys 4 score and 18 more years of visits to the Toronto General, less intense but equally successful.

    all best

  3. As a frequent flyer at TGH’s Adult Congenital Cardiac Clinic, I wish you all great good luck with the transition! If a complex case ongoing, prepare for a lot of frustration with a woefully inefficient (and no doubt over-burdened) system. I do hope it is smooth sailing for Nathaniel and crew.

  4. What a wonderful story. I’ve shared it on our Hospital for Sick Children nursing alumnae FB page. I was both a cardiac patient and a SickKids ICU nurse, graduating in 1967. Heart surgery was in it’s infancy when I had two life saving procedures as a young teen in 1958 and 1961. Returning to the hospital to train and nurse critically ill kids like your son was something I felt called to do. I know I always received more from the kids and their families than I could possibly have given to them. I think you will find the team at Toronto General to be just as caring. I certainly do! Best of luck to you all. Thanks for sharing your story. Eleanor

  5. Good for Nathaniel! I hope he was able to take advantage of the Good2Go program, which helps with transitions to adult care. My wonderful sister Miriam Kaufman, chief of adolescent medicine, started it. (And she went to medical school at Queen’s.) Best from Portland, Oregon. Naomi

  6. Wow, what an incredible story… Thanks for sharing. Nathaniel clearly kicks some serious ass. All the best to your fam!

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