The following is something I wrote for our annual memorial service for children who have died at our Children’s Hospital. But these same thoughts are with me every day.
It’s an honor to be here with you to celebrate the lives of our patients. Thank you for being here. Thank you for sharing your children’s lives with all of us. Speaking for the staff of the children’s hospital, thank you for letting us care for your family.
I’m awestruck to be in the company of all of you today. Because it’s always a little bit intimidating to meet your heroes, and when I think of our patients and their families, the word that fits is just that: heroes.
In medicine, it is always our greatest hope that patients who come to us for treatment leave better – cured of their disease, recovered from their trauma, grown large enough to feed themselves and breathe on their own.
But as you know too well, sometimes our patients don’t respond to treatment. Some have injuries that are too severe to survive, some are too young or fragile for medical technology to support. Too often, the medicine we need to help a child get better hasn’t been invented yet.
As a doctor, helping children get well means everything to me. When we lose a child, all of us who have supported your child and family along the way – doctors, nurses, child life specialists, social workers, therapists, environmental services – feel that loss, remember that child, and recommit to making medicine better in their memory.
In those memories and that recommitment, your child has left a profound legacy. Because it’s the children we can’t save who push us to develop new therapies and try new techniques. They are the patients who do the most to make medicine better, who make it more likely that the next child will survive.
It wasn’t so long ago that medical care looked pretty barbaric. Your barber was your surgeon, and your internist was prone to cover you in leeches! I like to tell my residents that if we do our jobs right, our grandchildren will think we were barbarians, just the way we look back on the medicine of 100 years ago and wonder, “What were they thinking?”
But really, I think we know what they were thinking, which is the same thing I think when I see a patient for whom we have no good answers: we’re going to do our best. We’re going to try everything we know, then we’re going to push the boundaries, and we’re going to honor our patients and families by learning from their experience to make care better for the next kid.
I’ve been interested in medicine and surgery for as long as I can remember. And it’s remarkable to think about how far we’ve come in what I still like to think is a pretty short lifetime.
I remember learning as a kid that there was simply no way for babies to survive before a gestational age of 26 or 27 weeks. As I progressed through my training, that number dropped. 25 weeks. 24 weeks. 23. 22. Now, 26 weeks isn’t even considered extremely preterm.
In the 1970s, less than one in ten kids with acute myeloid leukemia survived. 80 percent of patients with brain tumors or neuroblastoma died. We have a long way to go, but those numbers keep getting better.
When I was a kid, children born with common congenital anomalies like esophageal or duodenal atresia almost all died. Now surgery on newborns is routine and death is rare.
That happened because of a lot of hard work in labs and hospitals, and because of new technologies and techniques. But fundamentally, it happened because those children that exceeded our abilities at the time — and their families – pushed us to get better.
The reason we go to work every day committed to making medicine better is because we have the faces of your children – the kids we couldn’t save — in our heads every day when we walk into work in the morning to try something new, and every night as we go to sleep – or don’t go to sleep – thinking of what to try tomorrow.
I’m so sorry that your children’s journeys were cut short. I’m so sorry that we haven’t yet found a way to fix all the bad things that can happen to kids. It’s the extraordinary honor and privilege of medicine that we get to care for every child and family that comes through our doors. But it’s a special honor to care for a patient who dies, because they and their families are the ones who do the most get us closer to the day when we can find a cure. They are the heroes who have created the medicine we have today, and who make the world better for children tomorrow.
Thank you for letting us be a part of your child’s life. You truly are the heroes of medicine.
Jonathan Kohler is a pediatric surgeon.and founder, RxCreative.com. He can be reached on Twitter @jekohler.
Image credit: Shutterstock.com
