May 1, 2024 — May is a month typically associated with family and fun, especially on the second weekend when many gather to celebrate moms. For the Payne family of Montgomery, Texas, it is also a month to focus on faithfulness. In early May 2016, Mom Sarah was excited for their second daughter to be born so they could return home and celebrate Mother’s Day that year with their firstborn, Kennedy. But those plans were shattered when Sydney arrived on May 2, 2016, and at just two weeks old was diagnosed with a potentially life-threatening heart disease.
Sarah and Matt Payne were delighted to learn they were pregnant for the second time. Big sister, Kennedy, was excited as well. Sarah’s pregnancy with Sydney was seemingly uneventful, normal and healthy. They knew Sydney would be born via a planned c-section and they were prepared. Sarah said when Sydney was born the infant was deemed healthy, and they were quickly discharged to their new normal — a family of four back in their home. Sarah remembers taking Sydney to her 14-day check up with their primary care provider who heard a ’gallop’ in the baby’s heartbeat. According to Sarah, “We were very blessed that a scheduler at Texas Children’s Hospital noticed Sydney was only 14 days old and got us in to see a pediatric cardiologist the next day. That appointment changed our lives forever.”
At 15 days old, Sydney was diagnosed with a rare form of Cardiomyopathy — a condition that impacts the heart muscle rendering the heart unable to efficiently pump blood throughout the body. In most cases, Cardiomyopathy gets worse over time. For Baby Sydney, it was untreatable in her tiny heart. She was rushed to the Heart Failure Cardiovascular Unit at Texas Children’s Hospital and was placed on a ventilator. Two weeks later, she was added to the United Network for Organ Sharing (UNOS) waiting list for a new heart. No one knew how long the wait would be, but all were surprised and grateful when on June 16, 2016 (just 14 days after being listed), her perfect, new heart was found. The six-week-old infant’s transplant surgery lasted nine hours, which was agonizing for Sarah and Matt. But at 3:30 am on June 17th (two days before Father’s Day that year) they were told her new heart was beating. They were grateful and relieved.
Once they knew Sydney’s new heart was beating, Sarah and Matt were able to start thinking about what the next several months looked like for their family. No one really knew how long Sydney would be inpatient at Texas Children’s, but Sarah and Matt did know Sydney’s unexpected transplant journey would be costly. A transplant social worker at Texas Children’s talked to them about many aspects of Sydney’s recovery and care going forward. She also suggested they reach out to the Children’s Organ Transplant Association (COTA) to see how the organization might be able to help. On June 20th, three days after Sydney’s transplant, Sarah called COTA to learn more … and later that same day the family’s signed agreement arrived at COTA’s headquarters. The Payne family officially became part of the COTA Family, and Sydney 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 are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On July 8th, Sarah posted on the “Sydney Strong” Facebook, “I want to share a very personal and private journey our family has been going through for almost five weeks. When Sydney was two weeks old, she was diagnosed with a rare form of Cardiomyopathy that is untreatable. She has been extremely sick and has been on life support at Texas Children’s Hospital. She has had a ventilator and many, many medicines that kept her with us while we waited for a generous, wonderful family to gift us a new heart. We waited for 14 days. She got her new heart during a nine-hour surgery. Matt, Kennedy and I are grateful for the second chance life God has gifted her. With the support of our loved ones and friends, we have wonderful hope Sydney will come home in a few weeks or a couple of months. For now, we are asking for your prayers.”
Sarah provided updates almost daily during the initial post-transplant weeks. It was a tenuous time as the transplant team carefully monitored Sydney and tackled each medical hurdle that surfaced.
On July 14th, she posted, “It is so crazy how things can change so quickly. She is our little fighter, and she will overcome this, I know it! An ultrasound of her new heart shows that it still loves her and is functioning great, which is fantastic news!”
On July 20, 2016, a COTA fundraising specialist trained the family’s group of volunteers in Houston. The 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 Sydney P was launched, and the website was immediately available for online donations for transplant-related expenses. The volunteer team quickly got to work planning and hosting COTA fundraising events in honor of Sydney. Word spread quickly about Payne’s baby girl and her new heart. Supporters started signing up to receive “Sydney Strong” updates that Sarah posted frequently. What Sarah did not know at the time was that this social media tool would become a lifeline for family, friends and complete strangers as Sydney’s post-transplant journey took some unexpected turns.
As the months turned into years, Sarah’s posts and updates became less frequent because Sydney continued to improve, get stronger … and simply beat all the odds. One aspect of the family’s transplant journey that continued to be a lifeline for this family was their COTA volunteer team whose incredibly creative fundraising efforts took a big stressor off the family’s shoulders. Over time, this incredible group of volunteers raised more than $40,000 for transplant-related expenses.
On July 18th, she posted, “Today during rounds they decided to reach out to more hospitals to try and get more information to fix Sydney. Her leaking/drainage is back. Good news is her collapsed lung is now fixed. They said lung issues are common in children who have been on the breathing tube so long.”
On July 21st, she posted, “The Pluradesis procedure was unsuccessful. We did not think it would fix her Lymphadic issue, but it was worth the shot. Now they are presenting her case to other hospitals to see if anyone can help. Tomorrow they hope to remove her breathing tube. She will still have some support while she begins to breathe on her own. This is a HUGE step in the right direction. Sydney is now 8 lbs. 11 ounces and 11 weeks old.”
On July 24th, she posted, “OK … we need everyone to pray tomorrow’s conference call goes well. The Children’s Hospital of Philadelphia believes they can fix her Lymphadic issue! Her case is extremely rare, and they are the only hospital in the country working on solutions for this issue. Tomorrow, all the doctors from here and there will have a conference call with us. Everyone has to feel she is stable enough to transport her via hospital jet to CHOP.”
She continued, “My family had no idea how to fundraise or support us financially because none of us had ever been in this situation before. COTA met with my family, our volunteers, personally in Texas and then our journey began to raise funds for transplant-related expenses. COTA provided peace of mind and security for us, our family and our generous contributors.”
On July 25th, she posted, “At the meeting this afternoon all the doctors are on board with sending her to CHOP. We should be leaving this week sometime.”
On August 2nd, Sarah let everyone know, “We made it and are settled in at CHOP,” which was more than 1,300 miles from their home.
Sydney underwent the procedure on August 3rd. Unfortunately, her Lymphadic mapping was not as straightforward as the medical team desired. They told Sarah and Matt there was a 70% chance they had fixed the problem. And the next day, they were relieved and grateful to hear the CHOP team was cautiously optimistic the procedure had worked. Sarah shared, “Thank you to everyone for your kind words of support, prayers and encouragement. Our journey is not over, but I am happy we have taken a few steps forward again.”
Throughout these months, the volunteer team was actively planning and hosting COTA fundraisers in honor of Sydney, and COTA was by the family’s side to assist with the mounting transplant-related expenses associated with their unexpected journey.
On August 18th, she posted, “Since I last posted there have been some hiccups. She has a rare infection from a medicine taken by immune-suppressed people. This infection has made it to her central line, and she has a blood infection. The Infectious Disease doctors are confident they can get it under control ASAP. Hopefully, we will be on track to go home to Texas next week.”
On August 24th it finally happened. Sarah let family, friends and followers know the plane was on its way to pick up the family and fly them back to Texas Children’s Hospital, which was a big blessing and the answer to many prayers. Sydney’s heart team’s next priorities were getting her to breathe on her own and to tolerate food in her stomach so this family could all be together, under one roof … in their home.
September 2nd was a big day for Sydney. She was back and settled in at Texas Children’s when her cardiac team told Sarah it was time to take her breathing tube out. When it was removed, Sydney started breathing well on her own. While she would need supplemental oxygen for a while, this truly was a milestone for Sydney’s recovery.
On September 4th, Sarah posted, “Today marks 110 days in the Heart Failure Cardiovascular ICU at Texas Children’s (and a short stint at CHOP). In rounds this morning there was talk of moving us to a step-down inpatient room MAYBE in a week. Sydney has to prove she can continue to breathe with a mask and then nasal prongs, but if she can – we will be moved!! She is really making great strides and there is light at the end of her tunnel.”
In mid-September, Sydney was moved to a regular patient room. All of her leads were removed except for a pulse ox monitor. Sarah and Matt were enjoying her big smiles, watching her hand movements, and listening intently as she was finding her voice. On October 1st, Sydney got to go outside for the first time; she loved looking all around and was simply mesmerized by everything.
On October 5, 2016, after 142 days / 20 weeks / five months, Sydney was released from the hospital. Sarah and Matt knew there would be many trips to the hospital, but they were ecstatic to be returning home. Also on this day, Sydney decided to roll over and lift her head up for the very first time. It was a day brimming with blessings, milestones and joy.
Once they were home, Sarah posted, “We are doing good at home. Trying to adjust to medication schedules, doctors’ appointments and life! It is so good to be at home as a family. We have lots of doctors’ appointments coming up, but that is comforting because she will be looked at all of the time. Feeds are going well; still working on medication levels with the transplant team. Oh … and Sydney can shake a rattle!”
Once at home, Sydney was able to celebrate her First Halloween. Sarah said, “We went out by ourselves, and I kept her away from everyone, but I could not let her miss Halloween. There is no point having a new heart and a new life if you miss the fun times!” On November 24th, Sarah noted that Sydney was having a lot of firsts –this time her First Thanksgiving. She said, “We are thankful for so many things … nurses, PT/OT therapists, doctors (ALL of them), our donor family for this wonderful gift of life and mostly God for letting us have this precious time with Sydney.”
December 17, 2016, marked Sydney’s six-month, post-transplant milestone. She met Santa for the first time and wore sparkly red slippers. Sarah was excited because it was the first time Sydney had ever worn shoes. The family of four’s first Christmas was filled with joy and blessings … gifts and gratitude. They were thankful to be together, but also knew 2017 was going to be filled with doctors’ visits, tests, medications, lab work and many transplant-related expenses. Given this reality for the Payne family, the COTA for Sydney P team of volunteers continued to plan and hold fundraisers throughout 2017.
In June 2017, right before Sydney’s one-year heart transplant anniversary, Sarah shared this with the family’s many followers and supporters: This is long, but something I have debated on sharing for a long time. I typically do not post these types of memories, but it has been heavy on my heart. I have a feeling someone may need to hear this message of HOPE:
I will never forget the day you almost died in my arms and the last time I was able to hold you until the middle of July. I remember holding you in the Cardiovascular ICU when you were 20 days old. You (Sydney) were fine, and we were just hanging on. All of a sudden you started to vomit and then the alarms started sounding and going crazy. While I was looking at you, the light in your eyes just vanished, and you were gone. The doctors, nurses, our nurse, everyone came running in. They lowered the warming crib flat and began setting up all around us with trays and instruments. I tried to give you back, but the ICU doctor told me to keep holding you … that it could be a very long time before I held you again. And he was right. I held tight, then he reached for you, and I kissed your head. Daddy kissed you and we handed you over. It was not until my birthday in early July (a year later) that I was able to hold you again. That was one of the hardest days of our journey. My message is that when you are staring death in the face or hopelessness or deep sorrow, know there is light and HOPE always.
During Summer 2019, the Payne family had an unanticipated scare. At a check-up appointment, some of Sydney’s symptoms prompted her team of physicians to order a bone marrow biopsy. Sarah and Matthew were extremely relieved when the preliminary biopsy results did not show any active cancer, which was the concern. But several weeks later, after further studying her cells, they did find abnormalities that appeared to be related to an anti-heart rejection medicine she was taking. The Paynes considered this great news because it could be easily fixed with a medication change. The second abnormality was more serious – Secondary Myelodysplastic Syndrome (MDS), which is pre-Leukemia. For several weeks, Sydney was back inpatient due to unrelenting fevers and the need for additional testing.
After numerous consultations, tests and inpatient stays, Sydney was diagnosed with Pediatric Myelodysplastic Syndrome (MDS). The only treatment for MDS is a bone marrow transplant (BMT); Sarah and Matthew were devastated. After many more tests, appointments with specialists and numerous blood draws, it was determined her BMT would need to take place the first week of December. The Paynes returned home and had to keep Sydney in isolation to keep her away from germs and infections.
Right before Thanksgiving, as the family was preparing for yet another life-saving transplant, her most recent bone marrow biopsy results took the medical team completely by surprise. Sydney’s MDS had begun to reverse itself. The BMT was put on hold while the team waited to see what Sydney’s cells were going to do. Christmas 2019 was spent at home, waiting for Santa, enjoying the sights and sounds of the season … and not in the Texas Children’s Bone Marrow Unit. It was truly the best gift they could ever imagine.
Sydney had to return for periodic bone marrow testing and by mid-March 2020, her biopsy results remained unchanged. Testing showed she had 10% or less MDS cells in her marrow, which was a huge victory. Sarah posted, “Due to the Coronavirus, we now must keep Sydney isolated. Her weakened immune system and history make her someone who simply cannot contract COVID-19. Our number one priority is keeping her safe. God is good and we will all get through this crazy time. We just have to believe.”
According to Sarah, “Sydney was unexpectedly diagnosed with heart failure, so we went from a two-income normal family to a one-income family literally overnight. With just one income, we had the increased financial pressure of doctors’ bills, hospital parking, food at the hospital while juggling trips home to try and maintain some sense of normalcy for our older daughter. I will never forget sitting at Sydney’s hospital bedside and opening our first bill, which was $5,000, and thinking, ‘How on Earth are we ever going to pay for this?’ Our transplant social worker gave us some information about fundraising for the long journey we were about to embark upon. We chose COTA because of all the support they offer. There is always a real person to talk to. It is a team of professionals who genuinely care not just about fundraising, but about a family’s wellbeing. The people at COTA were there to help our family during the most difficult time in our lives.”
In September 2021, Sarah posted: “I am sorry I do not post very often anymore. I am not sure if it reminds me of the fragile times in Sydney’s life or what, but I do apologize. You have prayed, reached out, donated and been a part of her life. Here is a quick update. She is in Kindergarten and thriving. She is learning but is a bit behind and still rocking it … making a ton of friends and wearing all of her Avenger shirts. Sydney loves gymnastics and is an all-around goofy, five-year-old. Thank you for being prayer warriors. It is by the grace of God that Sydney is with us today.”
When recently asked if COTA funds raised in honor of Sydney P are still making a difference, Sarah said, “Just last year Sydney needed some help to deal with Post Traumatic Stress Disorder. We were referred to a program that could help her, but it was too expensive, and we could not afford it. That is when, once again, COTA stepped in. Because this was transplant-related, COTA could pay for this necessary treatment. Thanks to COTA, Sydney is truly healing from the trauma associated with her transplant journey.”
She continued, “I can breathe easier knowing that if/when Sydney needs another heart transplant, I will not have that feeling of financial despair when I am opening bill after bill. Just knowing that gives Matthew and me a sense of peace.”
This May 2024, Mother’s Day looks much different than it did eight years ago when Sydney was born, and within weeks, was in heart failure. Sarah no longer posts as frequently as she did at the outset of their transplant journey, but that is because she and Matthew have two active girls who are playing sports, working hard at school, riding their scooters … while living and loving life because of many selfless gifts that have brought them to this place. As Sarah says, “Life has simply been filled with blessings and normalcy. I hope everyone continues to remember all the blessings God has provided us and our Little Syd.”
On Sydney’s first day of kindergarten, she held up a board that said, “When I grow up, I want to be a doctor.” Her COTA Family looks forward to seeing all her dreams come true.
Enjoy Mother’s Day, Payne Family, from your COTA Family!
