Bloomington, Indiana — July 31, 2015 — The first week of August is designated as National Minority Donor Awareness Week, which is a seven-day period that one Englewood, North Jersey, family will be celebrating with joy and gratitude. If a suitable lung donor had not become available, it is possible their little girl would not be dancing to music with her big sister, playing with her pink toys and grinning from ear to ear during her favorite television shows … just like other toddlers will be doing this month.
Leiya Orellana was born nearly 10 weeks premature on May 10, 2012, and she was immediately taken to the neonatal intensive care unit at Saint Barnabas Medical Center in Livingston, New Jersey. She weighed one pound, and her parents, Tatiana Valderrama and Steve Orellana, knew the odds were against her. But with every bit of formula she tolerated, Leiya fought hard to survive.
At five months old, Leiya was diagnosed with Pulmonary Vein Stenosis and Pulmonary Hypertension. Leiya’s team of neonatal specialists determined she needed to be medically transferred to Children’s Hospital of Philadelphia (CHoP) for evaluation and infant cardiac care. Tatiana and Steve quickly grabbed some necessities and joined Leiya at CHoP’s Cardiac Intensive Care Unit. Tatiana and Steve relocated to the Gift of Life House in Philadelphia once they learned their family would be away from home for some time — Leiya needed a life-saving double lung transplant to survive. On December 12, 2012, tiny infant Leiya was listed for transplant.
Tatiana remembers speaking with other Gift of Life House parents whose children were also struggling to live. During a chat in a common area in the facility, a Gift of Life social worker encouraged Tatiana and Steve to contact the Children’s Organ Transplant Association (COTA). “Since Leiya’s birth we had been dealing with so many emotions and struggling financially so I decided to reach out and see what COTA was all about. From my first phone call to COTA’s headquarters in April 2013, I felt reassured,” Tatiana said.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to New Jersey to meet with the COTA for Leiya O volunteers and walked them through the entire process. By the summer months, the COTA volunteer team was moving forward with fundraising plans for transplant-related expenses.
According to Tatiana and Steve, “COTA provided our family hope at a very difficult time when hope was all we had left. The amazing support we received allowed us to be with our baby daughter when she needed us the most, and relieved the financial strain due to being unable to work. Every message left on Leiya’s COTA website reminded us we were not alone in the process.”
Despite being on so many medications, Leiya always made sure her feisty personality was front and center. Leiya celebrated her first birthday on May 10, 2013, in the cardiac intensive care unit. It was a day full of pink princesses, lots of toys and many friends, family members and hospital employees who stopped by her hospital room to make the big day extra special. A few days later, she pulled her feeding tube out of her nose just to remind all her caregivers who was really in charge.
On July 25, 2013, Tatiana and Steve got the news for which they had been waiting, and praying. Leiya’s new lungs were on their way to CHoP. Leiya was in surgery for only three hours, and there were no transplant complications. Leiya’s COTA supporters called themselves ‘Leiya’s Angels”, which according to Tatiana was an incredibly fitting nickname because the support of the baby’s COTA angels and supporters carried Leiya through this transplant … this second chance at life … this miracle.
“The first day after transplant her ventilator was weaned significantly, her blood gases were perfect, her chest tubes were draining normally, the foley catheter was removed and she had a perfect echocardiogram,” Tatiana remembers with a smile. “There was no more pulmonary hypertension. It was startling to see our little Leiya with so many tubes, lines and machines but she remained a feisty, fighting rock star.”
Leiya did encounter some bumps in her post-transplant recovery including a lung collapse during her first post-transplant bronchoscopy and biopsy. But despite that small setback, she remained super playful, full of laughter and quite happy. On September 4, 2013, Leiya was discharged to an apartment very close to CHoP to continue her post-transplant care and testing. By Halloween, this one-pound baby at birth now weighed 21 pounds. It was truly a miracle.
“COTA has been, and continues to be, pivotal to us being able to cope with Leiya’s transplant,” Tatiana said. “The financial burden of this transplant journey has been overwhelming. Once COTA stepped in and the wonderful volunteers kept sharing Leiya’s story, a significant weight was lifted off our shoulders. We were able to band together as a family and take things one-at-a-time. Being a COTA family allowed us to provide Leiya the best care possible.”
2014 brought many developmental milestones for Leiya, including baby sounds, strong legs she could begin to stand on, oral feeds and solid growth in all developmental areas. Just before her second birthday, Leiya began to crawl. On May 11, 2014, Leiya and her family were able to move home to Englewood where a huge second birthday celebration was held in her honor.
Prior to moving home, Tatiana blogged this message on Leiya’s COTA website, “We think about everyone who has supported us through Leiya’s journey and we are so thankful. Words cannot express how much we appreciate the support through COTA that has allowed us to take care of Leiya and dedicate our time to her recovery. It is the reason she is doing so well. Thank you, everyone, from the bottom of our hearts.”
Today, Leiya is an amazing toddler who is meeting all of her developmental benchmarks. She is, according to her parents, a miracle. Tatiana and Steve are very glad to be back in Englewood, living as a ‘normal’ family. They love to watch Leiya move and dance and giggle … and they are very grateful to her donor angel’s family for making a tough decision to donate their child’s organs.
Rock on, Leiya!
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1524158002toc@m1524158002ik1524158002.