For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email kim@cota.org.
August 2, 2021 — August is National Minority Donor Awareness Month. This national observance (first a day and then a week) was initiated in 1998 to increase our nation’s consciousness of the need for more organ and tissue donors from multicultural backgrounds. Starting last year in 2020, this nationwide effort to engage and educate multicultural communities about the need for organ and tissue donors was expanded to encompass the entire month of August.
National Minority Donor Awareness Month honors communities of color who have been donors, and encourages others to register as donors. It is about empowering multicultural communities to save and heal lives. Although organs are not matched according to ethnicity, and people of different races frequently match one another, individuals waiting for a transplant will have a better chance of receiving an organ if there are large numbers of donors from their ethnic background. This is because compatible blood types and tissue markers (which are critical qualities for donor/recipient matching) are more likely to be found among members of the same ethnicity.
COTA Kid Alice Adams’ family of Yuma, Arizona, knows these facts all too well.
Tara Rivera vividly remembers finding out she was pregnant again. She was 37 years old, a Type 2 diabetic and had delivered twins some years before. While excited, Tara was also anxious knowing this would be a high-risk pregnancy from start to finish. The family (Tara, Sheldon, and teenage twins Cecelia and Ethan) counted on two incomes to make ends meet, which meant Tara continued her job as an in-home elderly caregiver until the day she delivered.
Tara was nearing the end of her pregnancy, which had been complicated. At a prenatal visit in July 2018 she heard the frightening news that the baby was not responsive. Tara was sent to the local hospital to be placed on monitors. While she was very scared, she was also concerned about the twins’ counseling appointment and lunch with her cousin that were supposed to be ‘her day.’ Instead, Tara delivered Baby Alice that afternoon three weeks ahead of her due date. The tiny infant was immediately rushed to the Neonatal Intensive Care Unit (NICU) and Tara got to see her for only a brief moment. Alice was inpatient at Yuma Regional Medical Center for 11 days. She was a little jaundiced and needed platelets and white blood cells, but nothing seemed to be a major concern for the neonatal team. Alice was released from the NICU two weeks after being born; Tara and Sheldon were glad to be taking their baby home.
Tara took Alice to see her pediatrician for lab work four days after being released from the NICU. Tara was a little surprised when she was referred to see a liver specialist in Tucson, but she and Sheldon made the trip. Unfortunately their car broke down on the way and required an unexpected and unbudgeted overnight hotel stay, but they eventually made it to the appointment. Dealing with family issues, like finding someone to go to the house and stay with the twins and dealing with an older car that was unreliable, were going to be insignificant annoyances in a matter of days when on August 3rd the Tucson medical team told them Baby Alice had Biliary Atresia and would be immediately taken two hours away to Phoenix Children’s Hospital via ambulance.
Biliary Atresia is a rare childhood disease of the liver in which one or more bile ducts are abnormally narrow, blocked or absent. This sometimes deadly disease impacts one in every 10,000 to 15,000 children. Children are born with this disease and doctors do not know, as of yet, what causes it to occur.
That day in August 2018 was the beginning of an incredibly long and challenging transplant journey for this family … and their tiny warrior. “We knew NOTHING about Biliary Atresia. We were also told some of her organs were in the wrong place, she had multiple spleens, and her liver seemed to have anatomy problems. And then at Phoenix Children’s they had to completely open her up which was completely unexpected,” Tara said. The doctors found Alice’s liver to be damaged and performed the Kasai Procedure while the baby was in the operating room in hopes they could get some of the poisons in her liver to start draining. This would be just the beginning of much challenging news about Alice’s medical complexity.
She remained inpatient at Phoenix Children’s from August until mid-November. The family (primarily Tara due to Sheldon’s need to return to Yuma to work) endured nearly daily meetings with specialists, were faced with numerous medical challenges and decisions, and paced nervously during many surgeries their sick little baby underwent.
When they were finally able to take Alice home, Tara had to manage the baby’s complicated care routine. It was overwhelming, but Alice did get to spend her first Christmas at home in Yuma with her twin siblings. This was a huge gift for Tara. On January 8, 2019, Tara loaded up the car and once again made the three-hour trip to Phoenix Children’s with Alice for a regular clinic appointment — which they had been doing twice a month since she had been released from the hospital. At this visit it was discovered Alice had a virus that was further damaging her sick liver — her liver numbers had plummeted even further. Alice was immediately hospitalized and on January 10th she had her first transplant evaluation. This inpatient stay lasted about a month and was filled with complications, unexpected news and an increasing level of fear.
There was, according to Tara, a little light in a lot of darkness when a transplant social worker at Phoenix Children’s sat with her to talk about the journey the family was facing including potential financial considerations. She highly encouraged Tara reach out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help ease some of the family’s stress and anxiety. Tara’s best friend, Julie, called COTA on January 19th to learn more. Julie called Tara right after hanging up to share the sense of hope she had received on the introductory call with COTA. She also volunteered to be the lead volunteer if Tara decided to move forward with a COTA fundraising campaign. Tara returned the paperwork on February 11th and Alice’s family officially became part of the COTA Family.
“Everybody at COTA is amazing on the telephone,” Tara said. “Shortly after we signed the paperwork, I received a call from COTA’s President Rick Lofgren. I will never forget it. When Rick shared even more information about COTA, I knew this was the right decision. Rick talked to me about other COTA kids who had Alice’s diagnosis. Rick taking the time to share their stories and good outcomes gave me hope. So many of our friends and family members had been telling us to set up a GoFundMe, but our transplant social worker disagreed and told me to join COTA ASAP. It was the best decision we made.”
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime.
On March 22nd, a COTA fundraising specialist trained the family’s group of 17 volunteers in Yuma, Arizona. The COTA staff member talked to neighbors and family members about COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website they would be provided. The team got to work planning fundraisers for COTA in honor of Team Alice to help with mounting transplant-related expenses.
While the COTA team was working hard in Yuma, Tara and Alice were still inpatient in Phoenix. Alice remained stable but continued to throw her medical team curve balls through the end of June. Alice underwent additional testing at the beginning of July due to a myriad of medical problems she was experiencing. On July 25, 2019, Tara was by herself at a meeting with Alice’s transplant surgeon. She was not expecting to hear what he said, “Alice is no longer a candidate for a liver transplant at Phoenix Children’s. There are no more options here.” Tara’s eyes filled with tears. The decision was made due to how Alice ‘was wired’ in terms of her liver anatomy. Tara was told they would make an appointment for her with palliative care.
Tara cried the entire drive home to her temporary transplant housing. Sheldon was unable to come to Phoenix due to his job, which they desperately needed him to keep, and his need to be at home taking care of the teenagers. Tara and Alice went to the palliative care appointment and were told they would do whatever would be necessary for the family to say good-bye to the baby. They would be monitoring and making sure the end of her life was pain free. Tara remembers, “I was hearing every other word because I was holding Alice and she was being crazy active. They were talking about hospice and Alice was smiling at me. It was unreal.”
Unable to give up hope, Tara requested a second opinion and they were granted a referral to Lucile Packard Children’s Hospital at Stanford in Palo Alto, California … 626 miles … 10 hours and 14 minutes … away from their home in Yuma. Tara and Alice needed to get there in less than a week for the testing and consultation. She panicked, but then remembered her conversation with various COTA staff members and quickly placed a call. COTA’s Family Services Team connected her with the organization’s travel agency to help with booking a rental car (the family’s car did not have air conditioning, which Alice had to have for this long trip) and setting up safe and medically-child-friendly hotels that would also provide Tara food … all along the very long drive to California.
“COTA made getting to the second opinion possible,” Tara said. “There is no way we could have afforded to do this without COTA. COTA funds, and the amazing COTA staff members who worked with me, gave me peace of mind that maybe … just maybe … our little girl would get a second chance at life.”
Tara and Alice stayed in Palo Alto from August 5th through August 11th for numerous tests and appointments. Between the Lucile Packard team and the COTA team, Tara started to allow herself to dream just a little. Tara started thinking they might not actually lose their precious baby. Tara and Alice drove the 626 miles back to Yuma. It was determined that moving forward all testing, blood work, etc. would be done at Phoenix Children’s with all results sent to/decisions made at Lucile Packard. Tara and Alice were starting to settle into their new ‘home’ routine, with trips to Phoenix and phone calls with Lucile Packard. Finally, Tara started to relax a little.
During the afternoon of September 6th, Tara left their apartment to go to a resale shop to find some new clothes for Alice. She was finally growing and needed outfits that worked with her g-tube that was inserted into her abdomen for her feedings. Tara had just found the perfect Wonder Woman baby outfit with a cape in Alice’s size when she looked down and saw she had missed a call. She quickly called Sheldon who said, “Get home ASAP. They have a liver for Alice. There is a medical flight on standby ready to take us to Palo Alto right now.” Mom, Dad and Alice boarded the plane, landed in California and Alice was immediately prepped for transplant. The surgery was completed on September 7, 2019, and her new liver started working immediately. Sheldon had to return to Yuma to work once Alice was stable. Tara stayed at the Ronald McDonald House while Alice was inpatient recovering until mid-November.
According to Tara that entire time between the medical flight and Alice’s transplant recovery is a complete blur. While she does not remember very many details, Tara does remember being so very grateful for the transplant team, for the liver donor’s family and for the COTA volunteers back home who continued fundraising for transplant-related expenses.
Since arriving home from California on November 15, 2019, life with Alice has been good. According to Tara, “We celebrate everything with her. Every chance we get, we celebrate! Alice continues to have appointments and lab work in Yuma or sometimes back at Phoenix Children’s with results sent to Lucile Packard for review. So far, so good.”
Today, Alice is making big strides with her speech development. She has started counting out loud and is saying her ABCs. Alice is learning new words; she loves now being able to say family members’ names. Tara describes all of these development steps forward as super exciting! Alice is still holding family members’ hands to walk, but she enjoys the independence of cruising along using furniture pieces all by herself. She plays peekaboo endlessly and cannot hear someone sing “The Wheels on the Bus” too many times. All in all, Tara says it has been a great adventure to date.
“COTA allows me to dream about normalcy and makes so many things possible for us and for Alice,” Tara said. “We can get to all of her appointments (no matter where they are at) because of COTA. We cannot afford lodging when we need an overnight medical visit, and COTA makes that possible. COTA lifts every burden we have in regards to her transplant. If our family cannot figure something out, COTA always does. COTA is amazing — there is no challenge too big because COTA has a huge heart.”
“I have told so many transplant families about COTA! Sitting in the waiting room at Phoenix Children’s or Lucile Packard or participating in online liver transplant parent support groups, I always say to each and every family … COTA is the best decision you will ever make. Our family simply could not have afforded so many parts of Alice’s journey to date. COTA allows a transplant family to breathe easier and to have hope. COTA made Alice’s transplant possible. COTA saved her life. COTA will continue to be our lifeline … for a lifetime.”
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