Bloomington, Indiana — April 4, 2016 — April is celebrated nationwide as Donate Life Month. Braylin Soon’s friends, family members, and likely every student and teacher at David Douglas High School will be promoting organ donor awareness throughout the month as a way to thank the family who selflessly donated their child’s liver and saved Braylin’s life.
Braylin’s parents, Delinah and Kevin of Portland, Oregon, are quick to admit that Braylin’s need for a life-saving liver transplant took them completely by surprise. It is the kind of story that strikes fear in any parent’s heart. One day, a family’s life is crazy and normal and the next day … life is completely upside down. Now with Braylin being post-transplant and living her life to the fullest, Delinah looked back and wrote a narrative about that very different, upside down time in the family’s life.
May 2014 came as it did every year for our family with the excitement of our oldest daughter, Braylin, being cast in a production of Les Miserables, our son winding down his time at elementary school and our youngest daughter getting ready to have her seventh birthday party. Saturday, May 3rd was the big party day and everything was going well until Braylin started to throw a two-year-old tantrum about the cupcake she was given. It was completely out of character for her and we decided to end the party and send everyone home.
The following week seemed normal. We met the musical cast she would be working with over the summer, and I was busy running the school book fair. Braylin had a few bloody noses but her behavior was back to that of a typical eight-year-old girl. On Thursday Braylin came into the library and I noticed her eyes were yellow. I called our pediatrician and we went straight over. Her doctor drew some blood and told us she would be calling in a day or so with the results. The next morning Braylin went to school and I started packing up the book fair. At the end of the day Braylin skipped into the library and when I looked at her I saw her skin had a yellow tint. Back to the pediatrician’s office we rushed where more labs were drawn. We were sent home and told to stay by the phone.
Just after dinner on Mother’s Day Sunday, May 12th, Braylin’s pediatrician called and said she was concerned about the lab results and told us to head to Doernbecher Children’s Hospital where IV fluids would be used to flush out her kidneys. Braylin happily snuggled into the bed and we were set for a restful night at the hospital. One night turned into nine nights and we were taken by surprise to hear the diagnosis. Braylin was in acute liver failure. Completely unknown to us, she had the Autoimmune Hepatitis gene and it had activated and was responsible for the quick decline in her health. The bloody noses, yellow skin and eyes … and even the change in her mental state were all symptoms of the liver failure. My heart sank as I heard the news. Braylin needed to be transferred to another medical facility in the event that she would require a life-saving liver transplant. Braylin was sad because she realized this could cost her the Les Mis dream role.
On May 21, 2014, Braylin and I gave big hugs to our family before we boarded a life flight jet en route to Palo Alto, California. Our destination? Stanford Children’s Hospital. It took three nights in the ICU for the medical team to get her stabilized so she could move to a regular room. It was at that point when the hospital caseworker sat with me and explained how severe Braylin’s liver failure was. I was also told Braylin would definitely need a liver transplant to survive. Even more shocking? Her transplant would need to happen soon and she would be at the top of the UNOS (United Network for Organ Sharing) list.
There was nothing I have experienced in my life that I could compare to that moment. I was told our daughter was dying and her only chance to live was for another child to die in the next few days. I was in shock. I missed my husband, son and younger daughter, and most of all I was devastated that I could not fix Braylin.
The hospital staff was great — they got us anything we wanted and took excellent care of Braylin. On May 29th one of the surgeons walked into Braylin’s room with a smile on his face and a ‘Caution Live Organ’ cloth bag in his hand. “Congratulations Braylin! We have a liver for you,” he said. Against everything I knew and read, I asked the inevitable question, “It’s not in the bag is it?” “No,” he laughed, “this is my lunch!” A little humor in such an emotional moment was exactly what we needed. Braylin was pretty sleepy but she quietly lifted her right hand and whispered, “Yeah.”
I called my husband and he caught the evening flight from Portland down to Palo Alto and we sat with her through the night. The next morning we helped get her ready for surgery. We washed her body, braided her hair and cleaned off her nail polish. Braylin was taken into surgery at noon on May 30th. We sat for a while in the waiting room, but most of the day we were outside walking and talking. As evening set in we headed back to the waiting area where we witnessed each family leaving as their names were called. We looked around and saw we were the only ones in the room still waiting. At 6:30 p.m. Braylin’s main transplant surgeon walked through the door and sat with us. He said she was a pretty sick little girl. She only had about 2% liver function remaining, but the transplant had gone as expected. The best news? Braylin was doing well and would be out of surgery soon. Very shortly we would be able to see her.
The sigh of relief at that moment was the biggest I had breathed in a month. A few hours later we were
sitting with Braylin in the ICU. It was hard seeing her hooked up to all the machines with a breathing tube, but at 9:30 p.m. when she opened her eyes we knew she would be okay and back home arguing with her siblings in no time. She pretty much was.
Delinah remembers the day post-transplant when Kevin called her from home to let her know the medical bills were arriving almost daily. Delinah and Braylin were then living in the Ronald McDonald House near Lucile Packard Children’s Hospital so Braylin would be close for her daily blood draws and clinic appointments. According to Delinah, “After my husband’s call, I was hopeless as to what to do. That same day our social worker gave us a COTA brochure and told me to make the call because COTA could help. A few days later, the COTA campaign website in honor of Braylin was up and contributions were pouring in from all over. It was a relief to not worry about money and instead be able to focus on our daughter’s health. COTA gave us hope when it would have been easy to give up.”
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained community volunteers. A COTA fundraising specialist traveled to the Soon family’s hometown of Portland to conduct an on-site training. The COTA in honor of Braylin S team of volunteers quickly started organizing fundraisers and raising awareness about the family’s financial challenges … and the need for everyone to register to become organ donors.
Braylin and Delinah left Palo Alto and returned home to Portland on June 21, 2014. It was the start of Braylin’s second chance at life, and for Delinah and Kevin it was a time of figuring out their ‘new normal’ raising a medically fragile child.
Today, 10-year-old Braylin continues to pursue her love of performing. Her trusty Kermit the Frog is ever at her side as she reads countless novels with her favorite being mysteries and stories of intrigue. When asked, she confidently shares her biggest dream, “I hope to be a famous actress someday.”
If you are wondering — yes, Braylin made it back to Les Mis rehearsals in the middle of summer after her liver transplant and was able to play her dream role on stage throughout the production’s run.
According to Delinah, “The time since Braylin’s transplant has been a game changer for our family. We have made so many new friends, we have met amazing people, and we have racked up a lot of medical bills. But we have never stressed or worried about them because we are enjoying each day with our three kids. COTA has helped our family tremendously, and we are thrilled to be celebrating Braylin’s ‘liver-versary’ in just a few weeks.”
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ donors. Many COTA families are waiting for the life-saving call the Soon family received almost two years ago. Please go to donatelife.net and register to be an organ donor in your state. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1480860905toc@m1480860905ik1480860905.