Bloomington, Indiana — July 29, 2016 — Each year, August 1st -7th is recognized as National Minority Donor Awareness Week, which is a period of time one Chicago family will be celebrating with joy and gratitude. If a suitable heart donor had not become available, it is possible their little boy would not be alive today.
Miles Bejarano was born on November 16, 2013, to first-time parents, Roxanne and Angel. They were beyond excited to take their baby home after a challenging delivery that required Miles to stay in the NICU for two days of observation. Because Roxanne had developed a fever during labor, Miles had to be treated with antibiotics before they could go home. Once they were both released, the new family was very happy to be home together.
Right after turning three months old, Miles was on the floor for his tummy time when Angel noticed the baby’s lips were blue. Angel and Roxanne tried not to panic, but because his lips did not ‘pink up’ quickly and because the infant seemed like he was in a daze and somewhat unresponsive, they called 911. Miles was taken to the emergency room of Lurie Children’s Hospital of Chicago where the baby and his parents were placed in a room for observation. After a few hours, a resident came in and asked if Miles had ever had a chest x-ray. Since he had not, one was ordered and performed. The test showed an enlarged heart, which prompted further testing. After the results were studied, Angel and Roxanne were told Baby Miles was in heart failure with his heart only working at 11%. Miles was rushed to the critical care unit and immediately placed on the heart transplant list as status A1-priority. In a complete state of shock, the stunned couple followed their baby down the hallway to ICU.
According to Roxanne, “Sitting in the ICU with so many doctors and nurses rushing around our baby was frightening. While Miles was being hooked up to machines and having tubes inserted, we were calling family members to share the heartbreaking news. It is the most I have ever cried in my life. We had no idea at that point whether Miles was going to survive.”
Sitting in a hospital room, worrying about whether their baby would survive, proved to be very stressful. Both Angel and Roxanne started to worry about how they were going to pay for all of this treatment, days in the hospital, the actual transplant, medications and a growing list of expenses — even though they had good medical insurance. A transplant social worker became the family’s guide throughout the long days of stressful waiting. They were encouraged to reach out to the Children’s Organ Transplant Association (COTA) to research whether fundraising for transplant-related expenses might be a good fit and a source of relief for the couple. Roxanne and Angel studied COTA’s materials and in mid-March, they signed the agreement to become part of the COTA family.
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 quickly trained a family member who was immediately able to launch a COTA fundraising effort. Roxanne blogged on their COTA campaign website:
“Today was a very special day for me because I was able to hold Miles for the first time since he was intubated. It’s been 17 days. Today was very amazing and beautiful because the moment I held him, it was magical. I was sitting in a rocking chair and it felt really nice to soothe him by rocking back and forth. All signs look good from the doctors and they are very hopeful he will keep stable until his new heart comes. From what we hear from different families who did go through a transplant around his age, they waited about 2-3 months, which seems like years. We pray the heart will get here soon. We thank everyone again for all your support!”
Miles, Roxanne and Angel stayed in that area of the hospital for 38 days. On March 29th, the cardiologist walked into their room and shared the news that a heart donor match had been found and the heart was in transit to the hospital. “We didn’t know what to say. We were both in shock, and we sat in silence,” Roxanne remembers. Family and friends quickly gathered to surround them with support and love. On March 30, 2014, Miles received his new heart and his second chance at life. According to Miles’ transplant team, the surgery was a success and Miles was a rock star.
Three days post-transplant, Miles’ cords and tubes were being removed one-by-one, and his sedation medications were being lowered. According to Roxanne, it was unbelievable how fast Miles recovered. They were discharged to the nearby Ronald McDonald House on April 15th, which was just 17 days after Miles’ heart transplant. Miles was taking 20 medications, and he would require frequent doctor visits over the coming weeks of recovery. Miles experienced several complications including choking and vomiting, but otherwise his recovery was textbook.
On June 13, 2014, Roxanne and Angel felt comfortable enough with Miles’ medical care routine to leave the hospital campus and return to their home. There were many doctors’ visits and check-ups over the coming weeks and months, but the family quickly adjusted to Miles’ care routine at home.
In early October 2014, Miles underwent his first biopsy to check for signs of rejection. While the doctors saw small signs, Roxanne and Angel were assured it was nothing to worry about and it would be addressed with a slight change in Miles’ medications. According to Roxanne, “Miles is a survivor. He eats a lot, drinks lots of milk, and he is walking and talking. He is very ticklish at his neck and he loves Mickey Mouse. Miles climbs everywhere, touches whatever he can and puts everything in his mouth. He is our miracle baby,”
When asked if she or Angel ever lost hope throughout their transplant journey, Roxanne said, “Our baby’s need for a new heart was found by pure accident. After hearing the news, we were in shock and just trying to cope. COTA gave us hope by letting us only worry about our son. They assisted with transplant-related expenses and they were very patient with us since this was all new. The team at COTA helped us to see there was a light at the end of this long tunnel, and let us know that no matter the outcome of the treatment and transplant, COTA was there to help us in any way.”
Roxanne and Angel will be forever grateful to the donor family who made the decision to donate their loved one’s heart while struggling through their grief. Due to the selfless gift of his new heart, Miles is a toddler who is literally unstoppable and is meeting his developmental benchmarks.
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email gro.a1488211009toc@m1488211009ik1488211009.