New Heart Means a New Life for a Pacific Northwest Little Girl
April 1, 2020 — April is celebrated nationwide as Donate Life Month. National Donate Life Month was instituted by Donate Life America and its partnering organizations in 2003 and features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those who have saved lives through the gift of organ and tissue donation.
This month Cora Sutton’s family members and friends will undoubtedly be promoting donor awareness as a way to thank the registered organ donor’s family who selflessly donated the heart that saved Cora’s life in 2018.
Cora was born in July 2011 with a condition called Hypoplastic Left Heart Syndrome. According to her mom, Rachelle, that essentially meant her precious baby girl was born with only half of a heart. Rachelle remembers kissing the tiny infant’s very purple, sweet checks before Baby Cora was rushed off to the Neonatal Intensive Care Unit immediately after her birth. Within the first week of her life, Cora underwent two heart surgeries. From the day Cora was born Rachelle knew the only chance for her long-term survival would be a heart transplant. It was news that caused much stress and concern for this family.
However Baby Cora turned out to be a true fighter. Despite having minimal heart function she was able to hit all of her milestones as an infant and a toddler. According to Rachelle, Cora was like any other child laughing and playing, and throwing an occasional tantrum just for good measure. And Mom Rachelle was truly an expert because Cora had three older siblings, Sorya, Kallie and Marlie. (Sister Aliviya joined the family after Cora was born.) One constant reminder of Cora’s heart problems were her lips, fingers and toes constantly being purple and her inability to maintain a development-appropriate weight.
In 2015 at the age of four, Cora was admitted for a third heart surgery in an effort to delay her inevitable heart transplant. Unfortunately it was during this surgery her cardiology team discovered that her heart function was very poor. They told Rachelle Cora was too frail to survive the surgery. The ‘somewhere down the road’ heart transplant was no longer the case — Cora was in dire need of a new heart.
Rachelle witnessed Cora’s health steadily decline knowing there was absolutely nothing she could do to stop it. The family’s life was indeed impacted by waiting for ‘the call’ that a new heart was available. This chapter in Cora’s life lasted about two years — a time that Mom Rachelle remembers Cora becoming increasingly tired and a time when she could simply no longer keep up with her siblings. It was a time full of stress for Rachelle and her children. In August 2017 the transplant team at Seattle Children’s Hospital officially listed Cora for a new heart. Rachelle remembers being relieved at the news, but also being consumed with attempting to balance caring for a medically fragile child, raising Cora’s four sisters, keeping her full-time job and making frequent trips to Seattle from their home in Oregon (about 400 miles roundtrip) to meet with Cora’s heart team.
Aware of these many stressors, a transplant social worker at Seattle Children’s started talking with Rachelle about the possible need to fundraise to assist with transplant-related expenses. It was suggested she reach out to the Children’s Organ Transplant Association (COTA) to learn more about the support and guidance COTA could provide during this challenging time. On August 11th, Rachelle called COTA to learn more.
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 community 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 these COTA funds are available for a lifetime of transplant-related expenses.
Conversations with COTA staff members including COTA’s President Rick Lofgren helped Rachelle better understand the financial implications her family would face in the short term and in the long term. On November 17th COTA received Rachelle’s signed agreement and Cora officially became part of the COTA Family. In March 2018, COTA sent a representative to meet with a group of COTA for Team Cora S volunteers who gathered in Canby, Oregon, to learn more about what needed to be done. This group of family members and friends quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
“When the social worker first talked to me about COTA I was unsure whether or not to move forward,” Rachelle said. “After the COTA representative flew all the way to Oregon to train our team of amazing volunteers, I felt some of my stress start to lessen. Up until that point I was constantly worried about how I was going to make it financially with Cora getting a new heart and recovering in another state and trying not to lose our home in Oregon.”
“Once the fundraising got going and the thermometer took off, I started to feel a sense of relief,” Rachelle said. “There was money available for our lodging in Seattle, our food, Cora’s expensive prescription medications, our travel costs … so many transplant-related expenses. Once we became part of the COTA Family I no longer felt like I was drowning.”
On September 2, 2018, while Rachelle was grocery shopping, she got ‘the call’ that a new heart was available for Cora. She was stunned and scared but headed straight home, packed up the car and headed to Seattle with Cora. On September 3rd, Rachelle posted on the COTA for Team Cora S website, “Heart is in and beating on its own already and it went great! Tears of joy and huge relief!”
As soon as Cora came out of the surgery there was a total difference in her skin color. Cora was pink … more pink than she had ever been. It was a moment Rachelle will never forget. The first post-transplant weeks did present some hurdles and challenges including a bout of rejection, but Cora’s new heart soon started making a life-changing difference and the little girl’s road to recovery began in earnest. Rachelle recalls they were inpatient almost two months after the transplant; then they were required to stay in Seattle close to the transplant center for another few weeks. Miraculously they returned home in time for the holidays and Cora returned to her first grade classroom after Christmas break.
Today Cora and her four sisters are all under one roof in Canby. Rachelle is very busy keeping up with her daughters’ busy schedules, and specifically with Cora’s post-transplant medical checkups, medications, lab work and so much more. Cora loves to play outside, do crafts and specifically to color. She has recently learned to ride her bike with no training wheels and she has been practicing every chance she gets! According to Rachelle, Cora continues to do well with a limited number of appointments and procedures. During this time filled with ‘unknowns’ we are trying to keep her healthy and do our best to stay home and limit interaction.
“The Children’s Organ Transplant Association (COTA) has taken a huge weight off my shoulders and has alleviated so much of my stress. There has not been a need COTA has not met. Grateful does not come close to describing how I feel about COTA’s support during this challenging time for our family. COTA’s reallocations for transplant-related expenses have been so timely; our family has not missed a beat financially. Being part of the COTA Family has allowed me to solely focus on taking care of my daughter. COTA gives peace of mind knowing the support is available now and will be there … for a lifetime,” Rachelle said.
Cora hopes one day she will be able to go to medical school and become a doctor so she can help other kids like her with their transplant journeys. Rachelle is extremely grateful for the family who made the choice to donate the heart that is beating inside of Cora. She is also very thankful for COTA. Rachelle said, “Cora’s medical care continues in Seattle and COTA continues to assist in times of need. I cannot thank COTA enough for all they have done.”
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 Cora and her family received. You can visit www.RegisterMe.org to indicate your wish to be a life-saving organ and/or tissue donor. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.