Transplant family celebrating American Heart Month
For the Hernandez family of Salina, February truly is a month to celebrate selfless gifts from the heart. Their toddler, Peter, is alive and able to celebrate Valentine’s Day this year because of the new heart he received two years ago on Feb. 26.
Peter Hernandez was born in August 2018,the third child of Erin and Christopher Hernandez. Prior to his birth, Erin and Christopher did not know anything was wrong with their baby. But when Peter was 1 day old it was discovered he had a congenital heart defect — critical aortic stenosis.
The baby was immediately transferred to the nearest pediatric hospital, where he underwent a procedure to open his partially fused aortic valve using a catheter and balloon. Although the procedure was successful, Peter developed an infection that ultimately destroyed his aortic valve and caused an aneurysm on his aorta, which led to heart failure.
Still in shock about what was happening, Erin and Christopher were told to gather their family members and prepare for Peter’s cardiac surgery. They were also told Peter had less than a 50/50 chance of surviving the surgery. Without the surgery, Peter would die. At 4 weeks old, Peter underwent his first open heart surgery. He made it through, and began the very long road to recovery in the Pediatric Intensive Care Unit.
After several weeks, and a roller coaster of ups and downs (including a 30-minute cardiac arrest and being urgently and unexpectedly put on life support), Erin and Christopher realized Peter’s heart function was not going to improve and he was always going to be in heart failure.
At just 2 1/2 months old, Peter was listed for a heart transplant. Erin and Christopher had experienced a whirlwind of emotions since Peter’s heart failure diagnosis. They did, however, start to feel a small sense of relief when a transplant social worker introduced them to the Children’s Organ Transplant Association and suggested they reach out to learn more about how COTA might be able to help. Erin called COTA on Nov. 8, 2018, and was able to quickly get answers to their many questions. She hung up the phone confident COTA could definitely take away some of the family’s stress and anxiety.
“We were unsure what to expect from COTA, but with some encouragement from a friend whose family was also a COTA family, we decided to seek more information,” Erin said. “From the very first telephone call, I could tell COTA was going to be great to work with. They were kind, understanding, positive, helpful in every way, and were incredibly easy to work with. I could tell that COTA had a heart ... a heart for supporting and taking care of transplant families.”
On Nov. 14, Peter’s Ventricle Assist Device (VAD), called a Berlin Heart, was placed, which meant the baby would be in the PICU until a new heart would be found. COTA received the family’s paperwork on Nov. 21, and the Hernandez family officially became part of the COTA Family.
The Children’s Organ Transplant Association 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 nonprofit, so all contributions to COTA are tax deductible, and COTA funds are available for a lifetime of transplant-related expenses.
On Jan. 8, 2019, a COTA fundraising specialist trained volunteers (family members and friends) in Salina for the COTA for Peter H campaign. Erin and Christopher’s original COTA connection, a COTA mom whose son was doing great post-transplant, enthusiastically agreed to be the lead volunteer for the fundraising effort. The COTA staff member walked the group of attendees through the entire COTA fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website the volunteers and family would be given for fundraising and promoting the family’s story. This group of friends and family quickly got to work organizing fundraisers for COTA in honor of Peter to help with mounting transplant-related expenses. These COTA volunteers worked nonstop to plan and implement creative COTA fundraisers that generated more than the team’s goal of $75,000 in a short amount of time.
According to Erin, “COTA and our team of volunteers took care of all of the fundraising details and did a great job of communicating with our community about our family’s transplant journey. This allowed us to focus 100% on Peter because our financial worries had been lessened to such a great extent.”
Peter’s unexpected diagnosis also brought with it unexpected absences from their jobs. Christopher decided to cancel client appointments for days and weeks at a time to be at Peter’s hospital bedside. And it was decided Erin would likely not be able to return to work as a classroom teacher for a long time. This meant the family’s financial reality was temporarily lost income from Christopher’s job and complete loss of income from Erin’s.
“Having a sick child is one of the hardest burdens a family can bear,” Erin said. “But also worrying about losing one’s home or not having enough money to buy food and necessities for the other children puts double pressure on parents. It was a huge blessing that COTA could help with household expenses when we lost income, which allowed us to focus on being together and being fully present with Peter while we waited for a new heart to become available.”
Peter received his new heart on Feb. 26, 2019, when he was 6 months old. It was the greatest gift Erin and Christopher could imagine. Peter’s recovery was somewhat smooth, and he was released from the hospital for the very first time when he was 8 months old. The Hernandez family then moved into the Ronald McDonald House that was located near the transplant center. At 9 months old, after 284 days, Peter finally was released to go home to Salina on May 31.
“We have been so blessed by the ongoing outpouring of support from our community,” Erin said. “So often people asked what they could do for us or let us know they wanted to give us a gift but did not know what we needed or how to get it to us. It was such a blessing to be able to direct them to the COTA website set up in Peter’s honor and to assure them COTA was a reputable nonprofit organization which meant their gift would be tax deductible and only used for transplant-related expenses.”
During his first cold and flu season post-transplant, Peter did have to return to Children’s Mercy Hospital in Kansas City (three hours from the family’s home) for about three weeks. Again, this meant part of the Hernandez family was temporarily displaced and they were separated. During this inpatient stay COTA funds were once again a necessary lifeline for food, lodging and transportation expenses incurred by the family.
Currently the Hernandez family is preparing for a big second transplant anniversary party for Peter at the end of the month. To Erin and Christopher’s joy, Peter is growing stronger and is tolerating his new heart well. These days are filled with Peter’s favorite things — his sister, Aurora, and brother, Michael. He loves imitating his siblings, listening and dancing to music, reading books and being the center of attention.
“Peter’s transplant journey has changed and blessed our family in many ways,” Erin and Christopher said. “And so has becoming part of the COTA family. In addition to lessening our financial worries and making sure we had a house to come home to, COTA staff members regularly check in on us to see how Peter is doing. This includes COTA President Rick Lofgren, who has called multiple times to make sure we are all OK — even after we reached the fundraising goal.
“Our family will be forever grateful to COTA for stepping in and providing support and guidance through the most stressful time of our lives. It is such a comfort to know COTA will be there with us throughout Peter’s entire life. We will always have follow-up medical appointments three hours away from our home, monthly medications, regular lab work and medical tests all of which can be covered by COTA funds now ... and for a lifetime.”
Erin and Christopher added, “Even with the uncertainty in our world, it is good to know our family can count on COTA through it all.”
This Valentine’s Day, Peter will likely be eating his favorite foods and doing his favorite things, which will include reading, dancing, keeping up with his siblings and snacking. He will also be playing with either Spider-Man toys or his car collection. The Hernandez family will be remembering Peter’s heart donor angel with love.