A Washington Toddler Receives the Best Gift — A New Heart

This Month She Will Enjoy the Season Thanks to the Selfless Gift She Received

December 1, 2023 December is the month when many families focus on gifts. For a Pacific Northwest transplant family, December is the month to celebrate the ultimate gift — the gift of life. Lester Stoltz and Andrya Dodson are stepping into December focusing on their toddler’s third birthday and excitedly waiting to watch her enjoy the sights and sounds of the holiday season later this month … all thanks to receiving a new heart and a second chance at life.

Lester and Andrya were excited to learn they were pregnant with their first child. As Andrya was stepping into the last trimester of her pregnancy, they were looking forward to the final ultrasound before they welcomed their baby to the world. On that October day in 2020, the unanticipated discovery that their baby had an enlarged heart took them by surprise. Further in-utero testing revealed the baby had Cardiomyopathy, which had caused the left ventricle of the heart to expand and develop incorrectly. They were also told the tiny baby would not survive a Cesarean section at this stage in the pregnancy. A neonatal team from Seattle Children’s Hospital consulted with Andrya’s obstetrics team who determined it would be best to keep Andrya on bedrest and allow the baby to grow to 37 weeks. The news … and the plans they needed to quickly make …were sobering.

Pediatric cardiomyopathy is a rare heart condition that affects a small percentage of infants and children. Cardiomyopathy means disease of the heart muscle (myocardium). Several different types of cardiomyopathy exist and specific symptoms can vary. Cardiomyopathy is a progressive condition that may result in an impaired ability of the heart to pump blood, irregular or rapid heartbeats and, potentially, heart failure. Most infants diagnosed with cardiomyopathy eventually require a life-saving heart transplant for long-term survival.

In November 2020, Lester and Andrya moved from their Leavenworth, Washington, home and settled into a Seattle condo that close friends graciously invited them to use. Andrya was able to carry the baby to full term and delivered her via Cesarean section on December 5th. Their baby girl, Betty, was immediately intubated and transported to Seattle Children’s Hospital while Andrya remained at the University of Washington Medical Center for several days to recover from the operation. Lester remembers spending these days travelling back and forth between the two medical campuses to be with Baby Betty and with Andrya. Once the family of three was finally able to be together in one place, they learned COVID-19 restrictions dictated that only one parent could be with Betty at Seattle Children’s Hospital. They settled into the routine of Andrya staying at Betty’s Neonatal Intensive Care Unit (NICU) bedside during the day, and then returning to their borrowed condo each night to rest. Lester spent each night at the infant’s bedside.

This was their routine for about a month while Betty continued to hold her own. Christmas was spent on the split parent schedule, but their tiny baby who was fighting to live was the only gift they needed that year. Since both Andrya and Lester worked in the medical field, they were keenly aware of the hurdles their baby was facing. Andrya worked as a Medical Assistant (MA) at Cascade Medical in Leavenworth and Lester worked as an Emergency Medical Technician (EMT) there. Both had to put their careers on hold to be at Betty’s Seattle Children’s bedside.

While at Betty’s bedside, Lester started to research and calculate what he and Andrya could possibly be facing in terms of inpatient stay costs, loss of income, out of pocket medical costs, medical insurance for a medically fragile baby … all of these issues that would soon become stressors for the young family. A transplant social worker at Seattle Children’s Hospital encouraged them to reach out to the Children’s Organ Transplant Association (COTA) to see how the organization might be able to help. On December 18th, Lester called the COTA office to learn more. Lester spoke at length with COTA’s Family Services Outreach Specialist about insurance co-pays and deductibles they would soon be facing. He explained their home (and their jobs) were roughly 140 miles from the transplant center; therefore, travel, meals, lodging and parking were going to be significant, ongoing costs. Then, of course, there was the cost of a heart transplant and their portion of that likely substantial bill. But primarily Lester wanted to ask about a GoFundMe that had been established during Andrya’s pregnancy once family and friends heard about the baby’s condition. Of primary concern was the fact that funds raised via GoFundMe are considered taxable income for the individual or family who receives them. Lester understood the GoFundMe would need to be shut down before anything could move forward with COTA. Lester was agreeable to this due to numerous conversations with the social worker and the transplant team regarding the lifetime of transplant-related expenses they would be facing.

On January 8, 2021, the family’s signed agreement arrived at COTA’s Indiana headquarters, and Lester and Andrya officially became part of the COTA Family and Betty became a COTA Kid. A few weeks later in late January, a COTA fundraising specialist trained their group of volunteers via telephone due to COVID-19 and 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 Bettys Big Heart was launched, and the website was immediately available for online donations to help with transplant-related expenses.

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.

One of the lead COTA volunteers shared this message with their community of supporters:

While we continue to pray for Betty, the Stoltz family needs your help. Your donation to COTA in honor of Bettys Big Heart, no matter how big or small, will allow COTA to help this wonderful family during this difficult and unprecedented time. Travel to and from Seattle Children’s Hospital and University of Washington Medical Center, growing medical expenses, an uncertain number of months off of work, and daily living expenses are adding up quickly. Your support of COTA in honor of Bettys Big Heart allows Andrya and Lester to stay focused on Betty and help her grow strong!      

Lester and Andrya took turns utilizing the COTA-provided website to post ‘Betty updates’ to their community of friends, colleagues, COTA supporters and family members who were more than a hundred miles away. Here are some highlights of how they kept everyone connected to what was happening with Betty’s transplant journey:

January 19, 2021: There is a heart for Betty! As of January 18, 2021, a donor heart became available that is a match for Betty. The transplant team at Seattle Children’s Hospital is planning on performing a heart transplant surgery today to save Betty’s life. Please keep Betty and her family in your prayers. We all know the sad reality of what it means to have a donor heart available. Our thoughts and prayers go out to the family who is coping with the loss of a loved one. It is bittersweet, but Betty’s family will be forever grateful.

January 20, 2021: Betty has a New Heart! Betty had a stable night after a successful heart transplant! She is still recovering and has a long road ahead of her, but she is doing great and her new heart is beating on its own. She has great color returning to her skin. Lester and Andrya are running on fumes but have expressed relief and excitement for Betty’s future. Just one week ago Betty was going downhill quickly. Today, she has a new heart and is on the road to the healthy happy life of a normal little girl. Please keep praying for Betty and family, and also pray for the donor child and her family. Pray for peace in their hearts, knowing that their child helped save the life of another.

January 24, 2021:Last night Betty was taken off all breathing support and is doing great. This is a huge step, and she is already showing relief from tubes, tape and cannula on her face. She is still struggling with her feeds but is making progress. She will continue to have a feeding tube, which we do not anticipate being removed anytime soon. She was taken off a heart medication that she has been taking since birth. It is hard not to be overly excited with her progress since it has only been 5 days since her heart transplant. This next week we will begin OT and PT, to learn how to move and feed her. We thank all of you who have helped support us, so we can support Betty. We will continue to dream of a bright future.

January 28, 2021: Betty continues to amaze. We have graduated from NICU and moved to the floor. We are told life on the floor is more relaxed and will be a learning environment for Betty and for us. Betty has been removed from all cardiac medications and has no breathing support. She still has sedatives and will need to learn to eat, but for now she is still on a feeding tube where she receives mom’s milk and medications.

Simultaneously with our move to the floor, COVID-19 restrictions have eased up and both Andrya and I can be at her bedside. This is a great relief and we have already proved to be a great team and look forward to a more normal parenting schedule. Betty is much easier to pick up and does not require three people to do so. She still has some ‘attachments’ but compared to what she had before, they are very manageable.

Your continued support has been crucial to our success. The speed at which Betty progresses leads to thoughts of the future. We will likely be on the hospital floor for 2-4 weeks and will then move to a condo or apartment in Seattle for 3-6 months. During this time, I will commute to Leavenworth to work and to care for our house and pets. Andrya and Betty will enjoy the spring and summer in Seattle while the cardiac team focuses on her anti-rejection meds.

February 14, 2021: Betty is home in Seattle! Betty is doing great; her new heart is working great. There is no way to express our gratitude for such a great blessing. We were able to write a letter to the donor family and hopefully this will bring them some relief. We enjoyed a snowy day in Seattle in the comfort of the condo. It truly feels like home with Betty here.

Betty has a long list of meds that we diligently are learning to administer on time with accuracy. She has about 20 different medications and we have 15 or 17 alarms set to administer them. Thankfully there is an app that helps keep track and can be updated in real-time by her doctors, nurses and pharmacists.

The support we are receiving is tremendous and has allowed us to focus on being new parents to our special girl, which by the way is a wonderful and tiring experience in itself. Betty will have a bright and healthy future and your contributions will ensure COTA’s help all along the way. One of my biggest struggles is finding ways to express our thanks for all that has been done for us and in honor of Betty.

September 28, 2021:  Betty is wonderful. We had her GI, transplant cardiology, and ultrasound appointments in May. She weighed in at 12lbs 11oz and no longer needed Mom’s milk fortified. Betty’s heart is terrific. Her ECHO came back with a reject level of 1 which is fantastic, and her EKG came back normal as well. She is off all narcotics and sedatives. Meds are now 5 times a day (from 10 times a day) and she is down to 10 meds (from 18)!

Lester is back to work full time and Andrya is Betty’s fulltime Mom/Caretaker. Due to her transplant, she will not be able to attend a daycare so that leaves Mom and Dad. In June Betty turned 6 months old! We introduced baby food. She can have 1 teaspoon twice a day. She seems to like sweet potatoes and carrots and is not a fan of bananas.

In July Betty weighed in at 14lbs and 4oz and was 25.5 inches long. She is starting to hit some milestones even if she’s a bit behind. Most days start with her big smiles after waking from a long night of sleep and follows with her sitting in Dad’s chair. Then we do floor time, Johnny Jumper, physical therapy, feeding therapy, naps and play time. We returned home to Leavenworth near the end of July.  This little girl amazes me every day. We are still dealing with some pain and learning about her new feeding tube. On July 27th, Betty cut her first tooth, and another is right behind it!

This wonderful little girl means the world to us. Her deck of cards is unique but this Mom and Dad would not have it any other way. The universe and those up above looking down on us found it fit for us to have this special girl. Life for her will always be filled with daily meds and monthly medical appointments … but it will also be filled with lots of love, snuggles and kisses. Love you Betty!!! Proud to be your Mom!!!

December 2, 2021:  Betty is turning One! These words bring me so much joy to write. We have had a year to remember; we cannot believe the support we have been given. The feelings I have experienced in the last year can never be explained. Betty brings so much happiness to us and those around us. She is growing and learning every day. She tolerates so much with very little complaining. She is learning to eat and stand and will soon walk. She sleeps through the night. She is excited to see new places. I would say her biggest complaint is going to the hospital. Poor girl had a fever two weeks ago and got poked and prodded for 3 days. She came out on top and back to her normal joyful self.

Two years have passed since Betty’s First Birthday update. This month, Betty turns three-years-old; Andrya and Lester are grateful. “COTA has helped us immensely throughout Betty’s transplant journey to date. Specifically, with insurance costs. Betty’s monthly insurance premium is quite high and with only one parent still able to work fulltime, things have been financially tight for us. We are able to make her monthly insurance payment with an allocation from COTA. COTA has also helped us with our costly trips to Seattle. Sometimes the tests that need to be done take two days, which requires overnight lodging and meals in restaurants. COTA funds have been crucial for us to afford these trips as well,” Andrya said.

Very soon, Andrya and Lester will be celebrating Christmas at home with Betty, which is a milestone they were unsure they would ever see come to fruition. They are thankful for two gifts that cannot be wrapped or put in a gift bag with lots of tissue paper. The first is seeing Christmas through their toddler’s eyes. The second is the gift of support in the forms of donations to COTA for Bettys Big Heart campaign. In a relatively short amount of time, their friends and family members utilized COTA’s fundraising resources and guidance and were able to raise nearly $33,000 to assist with transplant-related expenses.

“COTA was critical to us during a time of great need and great unknowns,” Lester said. “COTA funds have been crucial to keeping our family financially whole when we were at our miracle baby’s hospital bedside and unable to work. With COTA, we did not lose everything. COTA gave us a platform where we could share Betty’s transplant journey with our networks back home. And when our family and friends could respond and share their words of encouragement, we were given a gift we will always treasure.”

However, this year has also presented new challenges for the family. Betty has been diagnosed with inflammatory bowel disease, but new medications prescribed by her new GI doctor have helped tremendously. Also, this year in March, Betty was diagnosed with moderate autism. These new hurdles, along with keeping her new heart healthy, are difficult for Andrya and Lester … but not insurmountable. Life today for this family includes weekly occupational therapy, physical therapy, speech therapy and feeding therapy. They check in with Betty’s nutritionist quarterly via Zoom. Every three months they travel to Seattle and for appointments with her G.I. Specialist and transplant team. Betty currently gets blood drawn monthly. It is a lot for Lester and Andrya to manage, but they both are thankful for the support they continue to receive from COTA for transplant-related expenses.

“We love our Betty no matter how many toddler/sensory meltdowns she has,” Andrya said. “Betty is so very happy most every day and she always has a big smile.”

Three-year-old Betty loves her inflatable bounce house that is filled with many Squishmallows. She loves Queen’s song “Bohemian Rhapsody,” the Eagles’ song “Hotel California,” and regularly watches Casper Babypants, The Bee Movie and Moana. Andrya said that due to autism, it takes Betty a little longer to like things so she watches one thing repeatedly for a while before they introduce something new. One of Betty’s favorite activities is walking with her daddy to the fruit stand to get apples.  

This Christmas will be filled with lots of singing and celebration. Betty will likely be gazing at the Christmas tree nonstop while chattering away. For Andrya and Lester, simply being able to watch their little girl enjoy the sights and sounds of the season is the only gift they will need under their tree for many years to come.

Merry Christmas, Betty, Andrya and Lester from your COTA Family!

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Fundraising for Transplant-Related Expenses

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