Seventeen-thousand. That is the number of adults and children currently awaiting a life-saving liver transplant in the U.S. Last year 2,330 people died waiting for a liver; 2,290 adults and 40 children. That number seems high considering the option of live donation that has been revolutionizing the transplant world for decades. The liver is a fascinating organ. It can regenerate itself which means a living person can donate just part of their liver to save the life of someone in need and it will fully grow back. Sadly, there is a policy among most hospitals in the U.S. that is preventing many of those awaiting a liver transplant from receiving the life-saving transplant they so desperately need. Most hospitals currently do not allow altruistic liver donations. Altruistic liver donation is a live transplant where the donor does not have a close personal relationship with the recipient. A simple change in hospital policy could greatly reduce the mortality rate amongst those on the donor list.
The strict rules which govern live liver donation were only brought to my attention this past December. I was scheduled to donate part of my liver to a friend’s daughter. Her name is Gabriella and at the time she was an 11 month-old baby with Biliary Atresia. Biliary Atresia is a life-threatening condition in infants where the bile ducts inside or outside the liver do not have normal openings. I went through a heavy screening process in order to become a live donor which included, but was not limited to an MRI, CT scan, x-rays, EKGs, multiple physical and psychiatric evaluations, and enough blood taken to feed the cast of Twilight for a solid year. Oh, and let’s not forget the liver biopsy where they stuck the world’s longest needle into my liver and scraped out cells to make sure it was healthy enough to donate. Did I mention I’m deathly afraid of needles? I signed piles of paperwork consenting to the surgery, even one form that asked “If something goes wrong during the donation process and we are unable to transplant to your intended recipient, are you okay with us donating to the next person on the transplant list?” At first I thought “What the hell kind of question is this? No. If you can’t give it to her then either sew it back on or throw it in a biohazard bin. I’m not going to let just any kid have it.” Of course, you can give it to the next person in line. In fact, you better. I get it, it’s a big surgery and hospitals need to cover their asses, so instead of giving a clever remark I smiled and signed away.
Our story soon aired on a few local news stations. I received many kind messages from strangers on Facebook. One of those messages resonated deeply with me. It was from a woman named Sheena. Sheena is the aunt of a little girl named Rebecca who also has Biliary Atresia; the same rare liver disease Gabriella was diagnosed with. Sheena told me that her sister had been distraught about Rebecca’s illness and she thought that maybe if I reached out to her and shared my story it would give her some hope that someone could come forward and do the same for her daughter.
Well, three days before our scheduled transplant, Gabby ended up receiving a liver from a deceased donor. This was the best news imaginable because now not only was this sweet girl getting her transplant immediately, but I knew that the universe was pointing me towards Rebecca. I wrote to her Mom and asked for Rebecca’s blood type, eagerly awaiting her response. Then, there it was, O+, a perfect match. This all unfolded this way for a reason.
When the coordinator from Lahey Hospital called that evening to confirm that Gabby was getting a liver and that we could cancel my surgery, I told her about Rebecca. She said she would coordinate things with the transplant team and get back to me. Weeks went by and I didn’t hear back. I called her and she said “The hospital is denying the surgery because they don’t think you have a close enough relationship with Rebecca”. My heart sank. Not only would I not be able to donate to her, but I now had to tell her mom the bad news too. I was beside myself. I had gone to countless appointments, been poked and prodded more times than I could ever count and lost feeling up to my elbow from signing so much damn paperwork. For what? I was three days away from surgery when Gabby got a liver. They told me if they couldn’t give part of my liver to her, they’d give it to a stranger. Well then why won’t they let me donate to this little girl? All of these questions ran through my mind and I started to feel defeated. If I felt this bad, I could only begin to imagine how awful it was for Rebecca’s family. I decided I wasn’t taking no for an answer.
I set to find out why this is such a common policy. It turns it is implemented on a hospital-by-hospital basis, but most hospitals actually do not allow altruistic liver donors. Just about all hospitals, do, however, allow altruistic kidney donors. I called around to several hospitals across the US to ask if they practice this policy (they all did) and why. I was given a handful of reasons—
“There is a black market for organ donation and donors are often coerced”.
Okay, I’m sure that does happen, but do we really want to assume everyone is guilty until proven innocent, especially when there are actual lives on the line?
“Donors without a close personal relationship are more likely to back out”.
So, you’re telling me you are afraid that, worst case-scenario, the recipient is going to end up in the exact place that they will indefinitely stay anyway due to these policies? How can anyone not see how senseless that is?
“We don’t want donors to feel pressure to donate”
If there’s anyone who is going to feel pressure to donate, it’s going to be someone who has a close personal relationship with a friend or relative who desperately needs a liver. If my mom, fiancé or sister needed part of my liver, guess what? They’re getting it. Even if I can’t afford the time off from work, even if I don’t feel comfortable with the procedure, even if I would have no help what-so-ever in the recovery process, I’d do it without a second thought. Hell, I’d give them my whole liver if it meant they got to live to see another day. You want to reduce the risk of donors feeling pressured? Allow anonymous donation- then there is virtually no risk of pressure involved.
I’m not saying I don’t trust that the hospital had my best interest at heart. I’m sure they did. Their job is to be my advocate. However, if they thought I was going to take no for an answer and walk away, they were in for what was probably a very annoying surprise. I immediately made a petition on Change.org. I wrote letters to every contact I could find at both Boston Children’s Hospital and Lahey Hospital’s transplant departments. Baby Rebecca’s mom, also named Rebecca, told me that when she questioned the doctors at Children’s Hospital about their decision, they responded, “If something happened to the donor, how do you think her family would feel?”. I figured that was a great question for the person who would be helping me recover the most, my fiancé, Rich. He penned a desperate letter to the transplant boards both at Lahey & Boston Children’s urging them to approve the transplant.
Weeks went by and I called and e-mailed until I was finally told the Ethics board would review the decision. After not hearing back for a few more weeks, I reached out again and was told they approved the surgery! I was ecstatic. Ecstatic, but also frustrated because Rebecca could have taken a turn for the worse in that month and we would have wasted precious time. It was also an extra month of her unnecessarily suffering. I decided to focus on the good. I reached out to Rebecca’s mom who instantly cried tears of joy.
I’m not going to lie. The surgery was brutal. It was painful, the pain medication made me sick to my stomach and throwing up after your entire abdomen has just been glued back together is a form of torture I wouldn’t wish upon my worst enemy. The first few months after the transplant I was so fatigued that I could barely function. It was rough. Having said that, I would do it all over again in a heartbeat. It saved Rebecca’s life. It’s been 5 months and I feel like a million bucks. I’ve never doubted my decision at any point in the process and I knew once this surgery was done, I was going to make it my mission to change the rules for live liver donation.
I reached out to members of my online liver transplant support groups and found so many of them had live donors come forward offering part of their liver, almost all who were rejected due to not having a “close enough personal relationship”. I spoke to one woman, Bel, who had thirteen live donors come forward who were ALL denied. THIRTEEN. Can you just imagine if they accepted the first one? Those next twelve could have gone on to donate to another twelve people in need, that’s thirteen lives saved. Never mind all of the people who would then be bumped up on the liver transplant list and get their own chance at life as well.
I spoke to another woman, named Sara, who faced similar issues while trying to find a donor for her daughter, Grace.
“Grace got about 500 applicants when we appealed to the public for a living donor. Heck, we put her story on the news here in Phoenix. After an overwhelming response of applicants willing to save my baby’s life, Stanford told me it was too many and I had to give a list of people who had applied that were either family or they would take a very close family friend. I needed to explain how I knew this person. My baby was dying. It’s crazy. She got a whole liver transplant the day the first potential living donor was scheduled to fly out to start testing. She is doing well now and thriving. But yes, it is not okay to say that somebody who is or might be a match is not a candidate based solely on the fact that they are not a close family friend. Some people aren’t as lucky as we are and may not get an offer at the last minute. The rules need to change. It doesn’t make any sense”.
Reading her story was so disconcerting. Five hundred strangers. Five hundred people willing to donate a part of their body to save the life of a stranger, just because of one story about one person. Suddenly the possibility of 17,000 live donors coming forward doesn’t seem that unimaginable. (There is a small percentage of those on the transplant list who need a whole liver, but the vast-majority are eligible for a partial liver donation).
I do understand that these rules are set out for the protection of the donor but in all reality, being the donor is the easy part. Yes, it’s painful. Yes, you need to take time off from work. Yes, there are risks associated with it as there are with any surgery. However, when all is said and done, you are back on the road to recovery. I’ve known every step of the way what I should expect and prepare myself for. My liver will grow back. My scar will fade- although I won’t lie, it does make me feel pretty badass. One day, I’ll even be able to enjoy some Johnnie Walker on the rocks again. For the recipients, they are in for a life-long battle. Rejection issues, constant blood draws, biopsies when those blood draws come back with undesirable results, and worst of all the possibility of needing to be placed on the transplant list again. The most heartbreaking part is these recipients are often young children who don’t understand what’s going on, why they’re in pain, and why mommy and daddy can’t protect them from the suffering they are constantly enduring. Don’t get me wrong, I appreciate being looked out for as a donor, but it is the recipient who has the greatest hardship. I’m a grown woman who is fully capable of consent. The recipient is in much greater need of advocacy than the donor.
When it comes down to it, I don’t for a second think that these hospitals have negative intentions or don’t care. In fact, I think it’s the opposite. I think these policies were made with the absolute best of intentions. However, they are outdated. I’ve talked to families who were denied transplants because it was between a parent and child and they were told the recovery would be too much for both of them to deal with at the same time. So, you need to have a close personal relationship with your recipient, but not too close or too personal. That pretty much means that if you need a liver, you better hope that you have a relative who is close but not close enough to live under the same roof, who happens to match your blood type, liver anatomy and can pass dozens of other screenings. It shouldn’t be this hard and it certainly doesn’t have to be.
By changing these policies and making live donation a more available option, it leaves more cadaverine livers available, thus increasing the survival rate for both of those demographics on the transplant list. If we aren’t practicing medicine to save lives, then why are we practicing it at all? It pains me to think of what could have happened to Rebecca had we not fought so hard to have the surgery approved. First do no harm. That’s the bible rule of medicine. If the lives of those with fatal illnesses can be saved by healthy, consenting adults, then are we doing no harm if we are denying them?
Although the fight to save baby Rebecca was fought and won, the real battle has just begun. I have started a campaign called LET THEM GIVE. Please follow our Facebook page to see how you can help, www.facebook.com/letthemgive.
Not only should the altruistic donor policy be revised but I also think if a donor has a scheduled surgery date and their recipient ends up receiving a deceased donor liver, they should have the option of donating to the next person on the list. They’ve already gone through the vigorous screening process and prepared for this surgery and recovery. I’d bet most donors would be happy to continue with the transplant and donate to the next person in need. My goal is to one day have a database where potential donors can start with an online screening that will match them up to local anonymous recipients in need. I’ve had multiple people ask me how they can go about becoming a live donor, not with any recipient in mind, just to help anyone whose life is depending on receiving a liver transplant.
We are living in a time where groundbreaking medical discoveries and progressions are being made each and every day. We can do so much better when it comes to live liver donation, so why don’t we? At this point of medical advancement, no one should have to die when there is a solution to their illness that will allow them to go on to live a long, full life.
I’m grateful to Lahey for reviewing and reversing their decision. Sweet baby Rebecca gets to live. Her parents don’t have to wait desperately for a phone call saying there’s finally a match available. I’ve been told by several people who are either the parent of a child awaiting a transplant or the person awaiting a transplant themselves, that waiting for that phone call is a guilt-inducing feeling. You are praying for this phone call to come to you but you know it means that someone out there has to die. On the one hand, you want to rejoice and jump up and down in excitement for this gift of life but on the other hand, you know there is a family out there who just lost someone they loved so dearly.
I am living proof that altruistic liver donation is as successful as it is necessary. I don’t have an ounce of regret and many people have told me they now feel inspired to become a live organ donor as well. Rebecca’s parents will now get to see her go to her first day of school, they will watch her graduate, walk her down the aisle, they will get to be beside her for every triumph and tragedy. Every person and loved one of a person awaiting a transplant deserves the same happiness.
People are dying in a day and age where they absolutely do not need to. So please, join our fight. Spread the word. This issue needs and deserves our attention. Let’s make it easier for donors to give the gift of life. For Bel, Gabby, Rebecca, Grace and anyone else who has or continues to wonder if and when that phone call will come. If potential donors are able, willing and even eager to give the most invaluable gift imaginable, the gift of life, then I say LET THEM GIVE.