COTA Kid Annabelle Williams Lung Transplant Recipient. Courtesy/COTA
COTA News:
January is designated as National Volunteer Blood Donor Month by The American Red Cross.
During this month, blood donations typically drop off due to holiday breaks from schools, inclement weather and winter illnesses. However, January is a month of great need for blood donations partially due to holiday-postponed surgeries and holiday schedules that preclude donors from giving blood. Each day, the Red Cross must collect 13,000 pints of blood across the country to meet the needs of patients. This and every January to come, a COTA family in Florida will be forever grateful to the blood donors whose blood was used throughout their daughter’s transplant journey and her life-saving, and complicated, transplant.
Annabelle Rae Williams was born in February 2019 to adoring parents, Christen and Justin. They had a toddler at home, Madison, and they were excited for the two sisters to meet. Annabelle was born via Cesarean section in a St. Augustine, Florida, hospital and appeared to be doing well. But Christen did have some challenges in getting the baby to nurse. When the pediatrician came to check on the newborn, he noticed her breathing was not normal. Annabelle seemed to be ‘cooing.’ Christen and Justin thought it was simply a sweet sound she made while sleeping. The pediatrician quickly told them their baby was in respiratory distress and needed to immediately be taken to the Neonatal Intensive Care Unit (NICU). Christen and Justin were in disbelief.
The next few days of Annabelle’s life were complicated and challenging. When she arrived in the St. Augustine NICU she was immediately put on oxygen, but within just a few days it was not enough. On her fourth day of life, Annabelle was placed on a ventilator; however, her oxygen levels continued to decline. The next day, the infant was transferred to University of Florida Health in Jacksonville, Florida, which had a higher level NICU … but the various medical teams and specialists there were still searching for answers. The UF Health NICU team performed genetic testing on the tiny infant who was struggling to survive. March 7, 2019, Baby Annabelle was moved again, this time to a Level 4 NICU in Gainesville, Florida. And March 19, the family was faced with their worst nightmare when they were pulled into a conference room and told there was nothing more that could be done for Annabelle. Christen and Justin learned the medical team was moving their baby to palliative care and were told this was the time to notify family members to come in and say goodbye to their precious Annabelle.
Christen remembers the various family members who arrived March 20. They all held Annabelle; they loved on her; they prayed over her. But as their last ‘goodbyes’ were being shared, they discovered Annabelle was not ready to say goodbye. The next day Annabelle began to improve, and the medical team agreed to transition her out of palliative care and to await genetic testing results. Eight days later those results were received; Annabelle was diagnosed with ABCA3 Surfactant Deficiency. The only cure for this genetic mutation is a double lung transplant.
After much deliberation and research, Christen and Justin determined St. Louis Children’s Hospital in Missouri, nearly 950 miles from their home in St. Augustine, Florida, would be the best place for Annabelle’s medical care. April 15, Annabelle was loaded onto a private medical flight to St. Louis, while Mommy, Daddy and Grandma took a commercial flight to meet her in St. Louis. She was listed for a double lung transplant April 26. Then the waiting began.
“Since no one really knows when ‘the call’ will come, it was decided that I would stay in St. Louis with Annabelle while Justin and big sister, Madison, would remain at home in St. Augustine,” Christen said. “We had a mortgage on our home in Florida so thankfully I found a fully furnished small duplex that was just a couple of miles away from St. Louis Children’s. I spent 10-14 hours each day with Annabelle at her hospital beside. I would return to the duplex to sleep and then would go back to the hospital. Her medical team became my family away from my own family.”
It was during these long days of waiting that Christen was introduced to an organization that was soon going to become another ‘family’ she could count on and cling to during this time of uncertainty in their transplant journey.
“While we were in the midst of Annabelle’s transplant evaluations, a wonderfully kind woman at St. Louis Children’s told me about an organization that existed solely to help reduce the financial strain of transplant families who travel a journey like ours,” Christen remembered. “I immediately went back to Annabelle’s hospital room, found the forms, and started filling them out at her bedside. It gave me a sense of hope just knowing that an organization like this existed.”
May 9, 2019, a family member called the Children’s Organ Transplant Association (COTA) to ask questions about the possibility of support and assistance that was desperately needed for this family who was facing what could be a lengthy journey to their baby’s double lung transplant. Just seven days later, their signed agreement arrived at COTA’s Indiana headquarters, and the Williams family officially became part of the COTA Family and Annabelle became a COTA Kid.
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; therefore, 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 of transplant-related expenses.
“From my very first phone call with COTA, I knew this was the support our family needed if we were going to financially survive Annabelle’s journey,” Christen said. “Like most American families we are not independently wealthy so paying for living expenses in two cities was overwhelming. COTA allowed us to breathe and focus on Annabelle in St. Louis and Madison in St. Augustine feeling confident we would all be once again living under the same roof.”
May 23, Christen asked Annabelle’s medical team if they had received any offers for the baby’s new lungs to date. Christen was told Annabelle had received three offers but none of them were the right fit for her. However, they assured Christen that Annabelle was at the top of the list.
In late May 2019, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Annabelle Rae was launched, and the website was immediately available for online donations to assist with transplant-related expenses.
According to Christen, “After being introduced to COTA by a financial coordinator at St. Louis Children’s and calling the 800 number, I instantly knew we would be forging a lasting relationship with this team of caring individuals. I found peace in the fact they would be walking alongside us as we faced so much uncertainty and so many transplant-related expenses. From the very first conversation, I realized everyone at COTA was filled with hope and empathy … not just for our daughter … but for our family.”
“I submitted all of the information COTA requested and before I knew it, COTA’s President, Rick Lofgren, was calling my cell phone to express his support, to share his experience and likely without knowing it … to reveal the heartbeat of this amazing organization.”
As the COTA effort got fully underway, Annabelle’s condition continued to deteriorate. June 2019 was a very rough month for this tiny fighter. She had a large Pneumothorax in her right lung and a small one in her left. They had been there from the beginning, but in June her lungs were so brittle from the disease that they ruptured. The medical team rushed to her bedside and inserted two chest tubes. These had to be replaced several times over the next weeks due to her lungs collapsing — and each time the tubes got larger. Following these traumatic events, Annabelle’s medical team once again talked about Extracorporeal Membrane Oxygenation (ECMO), which is an advanced form of life support. Christen and Justin knew it was time to make a big decision … would they let their little girl go or did they have one more fight in them.
They decided, “We have come this far, and she has fought this hard … we do not ever want to wonder what if.” After they shared their decision with the medical team, June 27 Annabelle was placed on VV ECMO as a bridge to transplant. According to Christen, they were told at the very beginning of Annabelle’s journey she would not be a candidate for ECMO but after the medical team saw how hard she had been fighting for the perfect set of lungs, they gave Annabelle the opportunity.
While waiting, hoping and praying, Christen posted this blog on the COTA-provided website:
It’s Been a While
Our family was told at the beginning of this journey to transplant that it would be like a roller coaster ride. During the initial evaluation we sat with so many knowledgeable people who shared what other families before us have faced. I was told that it would be a lot of waiting, and they were not lying. Waiting for Annabelle to show any sign of improvement, waiting for a glimmer of hope during tough days, waiting for the miracle of the gift of life to present itself for Annabelle. It has been a while since I have posted an update on Annabelle, and that is because we have had so much going on that at times it has been overwhelming for me to put it in writing. Over the last few weeks Annabelle has required additional chest tubes. During the last week of June, we had some of our worst days. We watched as our daughter fought so hard to remain stable. I cannot even begin to express how hard it was to watch her fight her way to recover from those scary moments. During those moments it was as if someone was sucking the breath out of me. It is horrifying to see your daughter in that state. Through it all, God has remained faithful. After her last big event, we met with her medical team and decided to place her on a type of support that bypasses her lungs and allows her lungs to rest. This decision has made all the difference! While it was very scary and it comes with high risks, we are praying the benefit will outweigh those risks. It allows Annabelle a little more time to wait and remain stable. We appreciate all of the prayers, kind words, text messages, cards, and donations that have been made to COTA in her honor. Our sweet Miracle In Motion, Annabelle Rae, we love you little darling!
July 7, 2019, Christen received a call from the pulmonologist saying they had a donor match Annabelle’s transplant team was excited about. He explained it was a high-risk donor and needed to know if Christen and Justin were willing to accept the offer. They gratefully did and July 9 Annabelle was taken to the operating room at 1:30 a.m. At 8:15 a.m. she was wheeled out of the OR … with new and amazing lungs. After breathing easier than they had in an exceptionally long time, Christen and Justin took a moment to remember and thank the donor’s family who made an incredibly challenging decision at an exceedingly difficult moment. To this day, they remain grateful for this life-saving act of kindness and see it as a blessing for little Annabelle Rae.
“Our hearts break for the donor’s family and the selfless decision they made to donate life,” Christen said. “Not only have they given Annabelle the opportunity at life, but so many others as well. Our hearts are overflowing as we watch our sweet baby taking deep breaths on her own.”
Their hearts also overflow with love and appreciation for their team of COTA volunteers who raised nearly $60,000 for transplant-related expenses. Christen said, “COTA came alongside of us, trained our volunteers how to fundraise, showed us first-hand how COTA funds alleviate a transplant family’s financial burden and taught all of us how to connect with our community with a website they provided for our use. COTA truly is the Trusted Leader Supporting Families, just like ours.”
“From Annabelle being listed, through the months leading up to the transplant and now with all of the follow-up medical care, COTA’s team of professionals continue to check in on us and help us with our expense submissions. When I received the call from COTA’s President and he shared their mission, explained their expertise and talked about their overarching goal to give families hope, I knew this was going to be a partnership … for a lifetime.”
Transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatments and monitoring. COTA exists to help families, like the Williams, navigate their transplant journeys … for a lifetime.
July 15, 2019, Annabelle was released from the heart center at St. Louis Children’s Hospital and transferred to the Pediatric Intensive Care Unit (PICU). And Aug. 19, 2019 – Annabelle’s six-month birthday — she left the hospital for the very first time since the day she was born. Oct. 6, 2019, Christen and Annabelle were able to leave St. Louis and return to their home to St. Augustine to be a family of four, living under the same roof, for the very first time.
For the first year after Annabelle’s double lung transplant, the family returned to St. Louis every three months for evaluations. These inpatient stays lasted about three days, but due to the travel distance from Florida to Missouri, each trip spanned a total of five days. Currently, Annabelle’s St. Louis visits are every six months for testing and evaluations. Christen said the expense of the travel, overnight accommodations, food, medical tests, prescriptions, and frequent visits for monthly labs in Florida are all costly but very necessary to keep Annabelle healthy. Again, Christen always interjects her gratitude for the presence of COTA in the family’s transplant journey.
“Through COTA’s fundraising guidance and expertise, our volunteers successfully motivated our community to see how they could help with the costs associated with a transplant journey. The community’s response was overwhelming, and it showed Justin and I just how much people cared … people who in many cases did not know who we were prior to this outreach,” Christen said. “People simply wanted to help and wanted to be involved. It was remarkable and gave our family renewed strength to keep pressing toward the goal even when Annabelle’s journey to transplant hit some bumps in the road.”
She continued, “I cannot adequately express how wonderful it is to see the good in humanity during dark times … and how much people care and want to be part of a family’s journey.”
In just a matter of weeks the Williams’ family journey will head in a new direction when Annabelle celebrates her fourth birthday, which is something Christen and Justin only dreamed about while waiting for her new lungs. Annabelle’s favorite things include swinging, being at the beach, riding her Power Wheels, playing soccer, praying, eating barbeque and eating fried chicken. Her most favorite person is big sister, Madison, who has also been impacted by this transplant journey. They are fast friends and remarkably close sisters. Christen and Justin love watching them play together and treasure the medical team, family members, volunteers, complete strangers … including their donor family … who made this celebration possible.
According to the American Red Cross, winter is one of the most difficult times of year to collect enough blood products to meet patient needs. That is because of, among other things, busy holiday schedules and bad weather often resulting in canceled blood drives. Furthermore, seasonal illnesses such as the flu force potential donors to forgo their blood donations. That is just one of the reasons that National Blood Donor Month, which has taken place each January since 1970, is such an important observance. Donating blood saves many lives and improves health for many people. According to the World Health Organization, “Blood is the most precious gift that anyone can give to another person – the gift of life. A decision to donate your blood can save a life, or even several if your blood is separated into its components – red cells, platelets and plasma.”
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, email kim@cota.org.
