In honor of Donate Life month, we will be highlighting stories of organ donation all month long. Our hope in doing this will be to show the many faces of organ donation and raise awareness of the impact and importance. Today we hear the story of Briggs Elliser, who at 5 months, was the recipient of three liver transplants.
On the List
My son Briggs, was born on December 29, 2014 weighing not so much and really long. Shortly after being born, Briggs was taken to the NICU for fast breathing and fluid in his lungs. Within a week of being in the NICU, Briggs’ breathing and fluid stabilized however, we got a phone call from the doctor telling us that his direct bilirubin was elevated. We were referred to a GI specialist and it was then we were told that they suspected Briggs had Biliary Atresia (BA) - a rare liver disease that is the leading cause for pediatric liver transplants. At one month old, Briggs had a surgery called a Kasai in which his intestines were connected directly to his liver in hopes to drain the bile that was being trapped in his body. This surgery is the final step for BA children to either delay or eliminate the need for a liver transplant. Unfortunately, like most other BA babies, the Kasai was unsuccessful and at 5 months old, Briggs’ was officially placed on the national waiting list for a liver transplant.
The day we got the call seemed like any other day. On June 24, 2015, I went to work and on the way home, I headed to the pharmacy to pick up some medicine. I was talking to a friend when I received another call from our Transplant Coordinator (I had already spoken with his transplant coordinator twice that day so I wanted to see what else they needed.) When I switched over to their call, I knew this wasn’t a typical conversation. In so many words, she told me that they had a liver and asked if we want to accept it? OF COURSE! OMG! OF COURSE! I rushed home, called everyone and started packing up the car for the ride to the hospital.
We made it to the hospital, checked in, did the pre-transplant work up, and settled in for the night. I don’t think we slept at all. Briggs flirted with all the nurses and was playing in his crib. Early in the morning, I handed over my 5 month old son to the doctors, nurses, and OR staff and prayed that this would be a successful surgery. We also spent the morning praying for the donor’s family. I was in shock that it was really happening. I was in disbelief that a complete stranger said ‘yes’ and chose to give life! In a mother’s darkest day, she decided to be part of saving my son and I don’t know how she found the strength to do that. My son’s life was saved. After surgery, we got to see him in the PICU, his breathing tube came out about 10 minutes later, and we got to see him awake and smiling. Those beautiful white eyes stared up at us and I felt like I could let out a huge breath that I had been holding.
A few days later, the ultrasound tech came in and started to check on everything. I am a CPA, not an ultrasound tech, but I believe I became one that day because when she turned on the machine, I knew that something wasn’t right. The screen was gray- no blue or red like in normal ultrasounds. Very early that next morning, we got a call that Briggs was going to need to have surgery that same day to remove a clot in his portal vein. We rushed up to Briggs’ room and were able to spend some time with him, hold him and love him before handing him off again. I didn’t know this at that time, but it would be the last time I would get to see him awake until a month and half later.
The 1 hour surgery turned into a 2, 3, 4 and eventually a 10 hour surgery. We were told that they had done everything they could possibly do, but they could not get blood to flow properly to the liver. We were all completely devastated. I had heard of others needing another urgent transplant but I didn’t think that we would ever be in that situation. Something made me ask about Briggs being eligible for another transplant and to my horror, we were told they weren’t sure. We went back up to the PICU with the understanding that they would make him as comfortable as they could and we would hear from the transplant committee about his status later on. Early the next day, we were informed that they would relist him.
The reality was that Briggs was incredibly sick and might not be able to hold on in time to find another liver. He was in complete liver failure. We were told he didn’t have much longer to make it. Despite being sick, we were still so thankful that a hero had given us those extra days. It’s hard to comprehend and remember that just three days before, he was sitting up and flirting with the nurses.
Third Chance at Life
Two days later, on July 1, 2015, Briggs received his second lifesaving liver transplant. This second hero, again a complete stranger, saved his life right in the nick of time. We would come to find out later that her name was Trinity, she was 14 years old, and she passed away of a brain aneurysm. She was very adamant about being an organ donor, so when the time came, her parents knew right away that she would want to help others. We have had the opportunity to connect with this family and they have had the chance to see what good came from Trinity and how her decision helped save Briggs’ life.
Transplanting an organ is a hard surgery. And when Briggs came back up from his second transplant, we were told that his liver numbers were in the 6000’s (for reference, ‘normal’ liver numbers are anywhere from 5 to the mid-high 50’s). We were told that again, Briggs would be listed for his third transplant. WHAT?!?! We were in shock but knew that we could get through it.
Briggs made it through the second transplant surgery. The following day, he was still heavily sedated, intubated and paralyzed when he had a seizure. His brain showed signs of swelling and fluid on it. He started retaining fluid all over his body. The Doctors did a bladder test and realized that he had something called compartment syndrome. He was rushed immediately to surgery where he was left with his abdomen open, and a vacuum continuously draining fluid (about a liter a day) from his stomach. He had bowel surgery and numerous biopsies. But during all of this, Briggs was holding on and he was making small improvements.
Waiting for the Weekend
You know that feeling you get when it’s Friday and you are just waiting for work to be over with so you can officially start the weekend? Imagine that wait, but now imagine you are waiting for an organ. And then think of all the people on the wait list that are doing that. Time drags on, very, slowly. But even though time was dragging on, Briggs was still hanging on. Briggs waited 17 days for his third liver transplant. In those 17 days, we had lots of offers but for one reason or another, the surgery would be cancelled.
On July 17th, we got the call that the perfect liver was found for him.
I remember walking back to Briggs’ room and hearing the song, “I can’t feel my face when I am with you” playing. The nurses were giving Briggs a bath and prepping him for his surgery. It was like time stood still and I tried to remember all the little details. I tried not to be scared. I tried to be strong, for both him and for me and most importantly, I had to keep faith that he would make it through this surgery. I can’t describe it but going into this third surgery, I was still thankful. Thankful because at this point, THREE separate people had become, and continue to be, our heroes. Those heroes gave our son a second, third and fourth chance at life.
The third transplant surgery was finished and when we got to see Briggs, it felt different. We weren’t doing around the clock labs, his color was PINK, and his eyes were white. A week later he was taken off of the breathing machine. An hour after being taken off the machine, I was able to hold my baby for the first time in over a month. I got to kiss his sweet face and he could see me. He could reach up and touch my hair like he loved to do (and still does). While I was holding him, I realized there were many moments during our journey that I thought I would never get to do this again. However, I was sitting here doing it because three generous organ donors. A few weeks later, we were released from the hospital and we haven’t stopped living since.
This summer marks two years since he received all three of his life saving liver transplants. We don’t say the first two didn’t work, because at the end of the day, he wouldn’t be here without them. Each one of them saved his life. Was it a little bumpy? Sure. But at the end of the day, it took all three of those heroes to have Briggs with us today. Because of an organ donor, I got to see him roll over, crawl, take his first steps, run, play with his brother, go to the beach, go to a birthday party, start preschool- I could go on! But it doesn’t end there. All the little moments - you know the ones where you look in your review mirror and you see your boys holding hands or making faces at each other, or when you are dancing in the kitchen making dinner and he comes running in there to dance with you. Or the times when you peek in the room and see his brother and him playing in the tent, the older one teaching him how to say bear or what color it is, or where to put the puzzle piece in. The moments when you think back to two years ago and think of all the progress he has made and wonder where did the time go and how did we get here? The moments when he reaches for you, he hugs you super tight and says mama- all those little things I get to have because of an organ donor and I don’t take them for granted for one second. I will spend the rest of my life educating others about the importance of organ donation and the GREAT things that come from it. Briggs’ life wasn’t the only one saved those days. These heroes saved all of us- they saved me and my husband from losing our child, they saved my son from growing up without a brother, his grandparents, aunts, uncles and cousins, all of us. I can’t wait to experience more “firsts” with him. I can’t wait to see all the things he will do in his life- and all because of an organ donor.
A New Perspective
Before Briggs, I had never thought about organ transplant or organ donation. The year before I had even taken the heart of off my license after having a conversation between my husband and myself. I thought, ‘I can’t get in a car wreck and them not try to save me- I need to be there for my kids!’ At the time, I was uneducated about facts surrounding organ donation and the need of one. Here is the thing though, the need of an organ can affect anyone- it doesn’t discriminate and it’s not on your radar until it is, and then it becomes very real and very personal. It is a weird and surreal situation to be in because I did not feel right feeling like I was praying or hoping that someone would die. But it is for this reason that I am glad I became involved in organ donation education. I now know that the death of someone will happen, and I have no control over that. What I DO have control over is that a family will say ‘yes’ to organ donation in the event they are faced with a tragedy and in that tragedy, their loved one will have the opportunity to give someone, like Briggs and our family, a chance at life.
You can follow Briggs' journey on Facebook by following Blessings For Briggs or click here
By Brittany Elliser