The Greatest Gift

Did you know that a single donor can save as many as 8 lives? Did you know a tissue donor can improve the lives of up to 75 people? Did you know that hundreds of people die every year while waiting for a donor? Let me share a story with you...

The Greatest Gift

Earlier this week, the premiere showing of a 90 minute documentary called Memento Mori took place at a small theater in Edmonton, Alberta. What made this documentary special was that it explored the world of organ transplantation, from both perspectives, with unprecedented access to the busiest transplant program in Canada. The University of Alberta is on the cutting edge of transplant science; it was here that physicians proved infants and small children are as likely to survive with an ABO-incompatible organ as they are with one that is a close match. It was here that the Edmonton Protocol for pancreatic islet cell transplantation was developed. Domino transplants, living unrelated liver donation and donation after cardio-circulatory deaths are not just a thought here, they're a reality. The documentary was the product of hundreds of hours of filming under the direction of anthropologist Niobe Thompson and produced by Rosvita Dransfeld. It profiles several transplant recipients, including a neonate with a badly damaged heart and an older lady in need of a liver. It also introduces the viewer to the other side of the equation, the donor family... and their heart-wrenching situation is not wrapped in euphemisms. A condensed version of the movie aired a week later on the Canadian Broadcasting Corporation's weekly program The Nature of Things under the title Vital Bonds.

I watched Vital Bonds today and it was an emotional experience on several levels. As a pediatric critical care nurse for more than 19 years, I've provided my critical care expertise to both recipients and donors. The work is absorbing and challenging, often frustrating and disappointing, but ultimately very gratifying.

Over the years I've spent many shifts taking care of children struggling to survive long enough to receive the gift of life, praying along with their families that today would be the day... then coming back the next day to do it all again. We have the technology to take over the work of the heart, lungs, kidneys and liver, and we use them. A lot. Juggling the many needs of these patients takes grit. It's not easy telling a teenager she has to get up, pedal a bed bike for as long as she can and stay awake during the day when her lungs are so damaged they need replacing, breathing is almost impossible and all she wants to do is sleep. It's even harder to tell a toddler he can't have any more water because his fluid restriction is so tight he has none left for the rest of the day. Encouraging them to eat when they really don't want to is a challenge not for the faint of heart. And getting them to take their meds is sometimes a Herculean feat. And then one day that long-awaited call comes in. Hallelujah!

Caring for the recipient post-op can be incredibly complex, with multiple immunosuppressant agents to be administered, antibiotics, TPN, blood products, pacemakers, CRRT, complex dressing changes and other critical interventions involved. Sometimes the new organ doesn't do its job. And sometimes the patient still dies. It's hard on the body, and it's hard on the heart. And all the while, we're also caring for the family.

But nursing the donor is the most exquisitely painful assignment of all. Sudden, catastrophic neurological injuries aren't common in pediatrics but when they happen, they're exactly what they sound like. Catastrophes. Patients are often dramatically unstable and require skilled, astute nursing to maintain their vital signs within optimal parameters, otherwise the organs may not be viable. The mechanism of injury could be a motor vehicle collision, a drug overdose, a ruptured arteriovenous malformation, a strangulation or some other unexpected event, but the results are always the same. A family is faced with not only the loss of their loved one, but they're being asked, as is required by law in most jurisdictions, to consider donation of their loved one's organs. That conversation doesn't get easier with time. When I was watching the meeting with the donor family in the video, it evoked all the same emotions as if I was there in person. I watched the patient's nurse rub her thumbs together as she looked down at her interlaced hands and I remembered doing the same thing at every one of those family meetings I've attended. The misery in the room was palpable, there on my TV screen. And it wasn't felt only by the family, it permeated the entire room.

But there's more to this story. Exactly 28 years ago to the day Memento Mori was shown publicly for the first time, my only son was listed for a liver transplant. His liver had been destroyed by a rare disease and he was living on borrowed time. He was 5 1/2 years old and he knew how sick he was; we didn't know just how bad his liver was until much later. We waited through the holidays with a pager we didn't really know how to use. When the battery in it was almost dead, the pager started beeping at random intervals, eliciting that heart-pounding epi rush of profound fear, then the deep despair that followed learning it was a false alarm.

In the end, the pager never did go off for real. He was in the hospital with an infection when the call came that there might be an organ at a hospital 1000 miles away, and we would have to go there for the transplant. The next few hours were a whirlwind; I had to rush home to pack, not knowing how long we'd be gone. My other children were emotional, needing some attention, and my husband was in shock. There were lots of tears when they left us to go home and wait for news. My son and I arrived at the other hospital at 3:30 am and 12 hours later, the surgery was over. The surgeon, who had performed most of the liver transplants in Canada up to that time, told me he had never seen a liver that bad, that it looked like a piece of driftwood. I'd love to say that it was smooth sailing after that, but he suffered endless complications, including a shower of emboli that left him brain-injured and nearly took his life. However... he is now healthy, happy and loving his life.

That brings us full circle. 28 years ago, I was just the mom of a sick little boy. I had no formal medical education, just the baptism-by-fire that goes with the territory of parenting a medically-complex child. Once the dust settled after our adventurous, tumultuous transplant experience, I returned to school, trained as a nurse and you know the rest. It's my way of giving back to the world that allowed my son to survive and to honour the family whose greatest tragedy has become our greatest gift. Please do me a favour and give some thought to signing a donor card. You never know whose life you might save.

For those AN members living in Canada who wish to view Vital Bonds, you can stream it from the CBC website. Unfortunately people outside of Canada will have to be content with my brief synopsis. At least for now.

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NotReady4PrimeTime

About NotReady4PrimeTime, RN

Pediatric Critical Care Columnist

Certified Pediatric Critical Care Nurse and parent of multi-handicapped adult son, married to computer geek.

5 Articles   7,358 Posts

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Specializes in LTC, CPR instructor, First aid instructor..

This happened at our local medical center. A relatively young woman arrived in activeV-fib. All attempts to get her heart back in NSR failed. Permission was granted to donate her needed organs to others. A surgeon arrived from France to harvest her arms for a child, and 7 other organs went to other recipients. It was amazing!

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Specializes in NICU, PICU, PCVICU and peds oncology.

I have no words to adequately describe the way it feels to be involved in the process. It's humbling, intellectually stimulating, incredibly challenging and emotionally both elating and draining. And it can be frustrating. There are times when it's ethically distressing. But that's a discussion for another day.

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Specializes in Nephrology, Cardiology, ER, ICU.

First, thanks for the article.

Second, because I know you, I just want to publicly say how much I admire you - you are both an incredibly devoted Mom but also a caring and professional nurse.

So glad you are my friend.

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Specializes in NICU, PICU, PCVICU and peds oncology.

Trauma, we're a mutual admiration society!

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We do DCDs in our OR sometimes. I've never done a DCD, and really only ever set up for a procurement. And I've only done a handful of transplants. The last transplant I was in was a living-related transplant. It's always incredible - it affects me in ways I never imagined possible. I always have to be a little amused when we have a little row of kidneys on pump. The technology (if they're on pump) keeping the kidneys viable while awaiting reimplantation is pretty awesome too (transplants go as emergent for our facility, but sometimes there is still a wait, example if we're primary for multiple organs to multiple patients other organs might go first). Granted, kidneys can go the longest before being reperfused, but I think it's so cool.

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Specializes in NICU, PICU, PCVICU and peds oncology.

DCD in pediatrics (which is what I'm most familiar with) isn't well-accepted here yet, for a lot of reasons. Because children have unpredictable trajectories following a cardiac arrest, with many experiencing acceptable outcomes even after a prolonged resus, it's much more of a slippery slope for the physician. We've done one, in a situation where the patient - a teenager - was never going to recover and the family wanted us to use whatever was viable to help others. They were very persistent and asked all the right questions. One of our physicians decided he'd take their request to whatever level he had to in order to meet their request. In the end it went to the pinnacle of administration and they were given their desired outcome. So far, that's a one-of.

Te technology for preserving organs is advancing so rapidly it's hard to keep up! Supporting injured lungs while they recover enough to make them transplantable will be huge in expanding the donor pool. What's been a real boon to us is the approval of living, unrelated liver donation. So many infants and toddlers die on the waiting list or in the immediate post-op period that we were ready to put a hold on them. Then we had our first anonymous donation and we're back to good outcomes.

There remains a degree of frustration when it comes to recipient selection. It's hard to watch a patient with chronic renal failure - a known contraindication - receive a heart or liver, knowing there will be months of CRRT ahead, and for some of those patients, a renal transplant will never happen. Seeing a person who has been gifted with an islet-cell transplant paying no attention at all to diet and immunosuppression makes me do a slow burn. Transplanting a healthy heart into a patient with severe pulmonary hypertension is almost guaranteed to be a failure; multiple high-dose pulmonary vasodilators (Remodulin, for example) and right ventricular assist devices will be needed, perhaps forever. So those kinds of things take some of the bloom off the rose. But organ donation remains the greatest gift one person can give to another.

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