Advancements in transplant science and electronic communications – two powerful tools that powered the hope of the family of a 4-year -old girl in need

When I was little, the phone sometimes rang in the middle of the night, jolting me awake. I knew who it was. My father, a Lions Club volunteer, had to meet up with the state troopers and help transport ice-packed eye donations for corneal transplants from the Lions Eye Bank in upstate NY.

“Give the gift of sight”… That’s how organ donation happened in the 1970s. People reaching out to people to help with organ donations. You gave a quarter to help eye donation research and picked up a roll of candy or put a bumper sticker on your car. Volunteer programs helped drive the awareness of the need for eye, tissue and organ donations, and research. Science made it all possible.

Fast forward to 2018.  My phone once again roused me from the couch coma and again the call was about organ donation. Except this time I didn’t hop into the car like my Dad. I stayed right there on the couch and started spreading the word, social media style, that a living liver donor was requested for 4 ½- year-old Sophia—a tiny member of our Girl Scout family.

I learned that my friend’s daughter had been elevated to the top of the organ donor list and the word spreading through social media was direct: A living liver donor would be an amazing life-prolonging gift for this family in need.

Steady advances in transplantation 

I’m a scientist but I’m even still amazed that we can have live liver donations. A portion of one’s liver can be surgically donated and regenerated in just a few weeks—a gift that grows again! Yet despite advances like this, organs are still in limited supply (see graphic below for the most up-to-date numbers). Every 10 minutes, someone is added to the national transplant waiting list. Over 100,000 people need lifesaving organ donations. A person might be able to help up to eight people simply by checking the box on their driver’s license renewal.

 

Research is key to future improvements in transplant success. Just as research allowed for the ability to harvest and transfer organs for transplants only a mere 50 years ago, science is also driving the research now into the stability of the organ donations themselves. One such effort for liver preservation was recently detailed in the journal Nature, which crossed my desk the same week our littlest Scout needed a new liver. Researchers with the Consortium for Organ Preservation in Europe have been experimenting on changing the common technique to maintain harvested livers before transplantation. Instead of ice storage, which maintains the organ but can cause irreparable damage to the connective bile ducts, increase reactive oxygen molecules, and cause mitochondrial damage with drastic decrease in ATP energy molecules, these livers were maintained at body temperature, and perfussed with oxygenated blood and nutrients in a technique coined normothermic machine perfusion (NMP).

Organs need to be of the exact right match and in very good condition to work with the fewest complications; and because of the limited supply, organs may need to be transported across the country. Unfortunately, the longevity of organs is usually a day or less. So this development reported by the European group represents a major advance in organ viability.

The NMP study resulted in 50% fewer livers that needed to be discarded before transplant. Body-temperature storage NMP procedures to mimic the human body allows future science researchers to investigate methods to potentially heal any sub-optimal organs that may have been rejected for transplantation, thus increasing the availability.

Our Scout’s outcome

Sophia got her new liver, but it came from a non-living donor. Her condition was too grave to wait for the right live match.

I got the news on a Friday night—from the same couch—and immediately shared this happy relief on social media. Alas, my phone buzzed once again, and this time the news was bad. Just days before being released from the hospital Sophia’s liver was rejected—her Mom texted me that she had a fever and was in surgery for a blocked artery. Oh, the roller coaster of emotions. Within moments, doctors laid plans for a new next liver, but we all realized the chances of finding another organ so quickly were slim.

But with scientific advances and through social media-sharing, and through the amazing generosity of friends and family and complete strangers, hope shines through. We learned she had a pool of living donors who had signed up for situations like this. Fortunately Sophia did receive a new liver, yet with mixed emotions, a young non-living donor was tapped for this little girl’s second liver.

There is still a very long road for this littlest Scout, but through science (and social media) the future for this family is much brighter now.

A second liver and a third chance at life. That’s truly amazing.