It was during tummy time when Angel Bejarano noticed his baby boy Miles’ lips were turning blue and he was having difficulty breathing. Roxanne, Miles’ mom, immediately called 911. Although he was stable by the time the paramedics arrived, Miles was transported to Lurie Children’s Emergency Room.
“Since Miles was no longer blue and acting normal, the paramedics gave us a choice as to what to do next – give him oxygen or take him to the hospital. We chose to have Miles taken to Lurie Children’s and we are so glad we did,” says Roxanne.
The results of these tests came as a huge shock to Roxanne and Angel. All the tests indicated that Miles was in heart failure.
His official diagnosis was dilated cardiomyopathy, a disease of the heart muscles, usually starting in the heart’s main pumping chamber. Miles’ heart was only working at 11 percent. “We were told Miles was in critical condition and that the only way he would survive was a heart transplant,” says Roxanne. “His heart condition was found by accident. He did not have normal symptoms of someone with heart problems. Miles is known for being such a happy baby that his heart condition would never have been discovered if it wasn’t for his visit to the Emergency Room, so it was a blessing in disguise.”
Based off the lab results, doctors concluded that Miles was most likely born with the heart condition and was slowly struggling with very minimal symptoms. “We were told we were ahead of the game. That if we had waited he would have most likely suffered a stroke or died of SIDS (Sudden Infant Death Syndrome).”
On March 29, 2014, Miles, who was just 4 months old, and his family learned that a heart was available. He went into surgery the following day led by Carl Backer, MD, Attending Physician, Cardiovascular-Thoracic Surgery. “Surgery was only about six hours. When we saw him later that day, Miles already looked so much healthier as unbelievable as that might sound. He was pink in color,” says Roxanne. “The doctors and nurses all said Miles was a rockstar!”
Today, Roxanne and her husband consider Miles their miracle baby. “We are frequent flyers of Lurie Children’s and are so grateful for the amazing medical care they provide Miles,” says Roxanne. “I am a member of the hospital’s Family Advisory Board and volunteer at Ronald McDonald House near Lurie Children’s to give back to other transplant families. We are so proud to support the hospital that saved our son’s life.”
Lurie Children’s performed Illinois’ first pediatric heart transplant in 1988. Our Pediatric Heart Failure and Heart Transplantation Program, the only program of its kind in the state and the second largest pediatric heart transplant program in the country, is widely known for its abilities to provide lifesaving treatment to infants, children and young adults with severe heart disease.
Performing an average of 15 heart transplants each year, our surgeons transplant young patients who have a wide array of complex and high-risk conditions. Patients’ heart problems range from those present at birth (congenital) to arrhythmia and cardiomyopathy.
Despite the complexity of our patients’ conditions, our patient outcomes are better than national averages for pediatric transplant centers. Specifically, our three-year survival rates for patients and the graft (new heart) are above 90%, compared with the 83% national average. Additionally, our wait list times are much shorter than average. Half of our patients receive a heart within one month, far below the average of 5.6 months.
The Families with Cardiomyopathy Clinic offers evaluation and treatment for patients with familial cardiomyopathy. In our unique approach, the whole family is seen during the same clinic visit. Examining cardiomyopathy in parents and children at the same time allows us to develop specialized treatment plans that are customized to your family’s genetic needs. In addition, combining the parents’ cardiac visit with their children’s visit allows for fewer trips to the cardiologist, and fewer missed school and work days. We also offer ongoing treatment, second opinions and genetic evaluation.
The clinic is a collaboration between Lurie Children’s Heart Center and the Bluhm Cardiovascular Institute at Northwestern Medicine. It is the only clinic of its kind in Illinois.