7-year-old Aylin C. graduates from BAYADA Pediatrics Care
Imagine yourself in this position. It’s been only a year since you moved from the Dominican Republic to the United States to be with your new husband. You’re still learning English. You’re a new expectant mother. And now, your doctors tell you that your child will be born with a serious congenital heart condition.
Sound scary? It certainly was for Yenni and her husband Julio (Junior).
In the summer of 2012, Yenni and Junior’s beautiful newborn daughter Aylin (pronounced Eileen) was diagnosed with Tetralogy of Fallot, a rare condition caused by a combination of four congenital heart defects.
At the Children’s Hospital of Philadelphia (CHOP), more than two hours from home, Aylin had multiple heart surgeries. She received a tracheostomy (surgical opening in her throat) for a breathing tube, so that her respiration could be supported by a ventilator 24/7. And she received a gastrojejunostomy (GJ), a surgical feeding connection to the small intestine, because her condition prevented her from eating by mouth.
Young Aylin lived most of her first nine months in the hospital, not knowing the outdoors, until she finally was cleared for discharge and came home to stay with her parents.
Coming home with a medically fragile child
BAYADA Transitional Care Manager Mary Simrell, RN had worked with Aylin’s parents at CHOP for months to get them ready for discharge and to match them with the best clinicians to provide her care at home. Aylin’s home nursing care team, led by BAYADA Clinical Manager Lisette Alicea, RN, RRT, were by their side at every step in the process: personally getting to know them and Aylin’s medical history; working with her doctors to create a care plan; setting up their home environment with medical equipment, medications and supplies; educating them on what to expect; and accompanying them door-to-door from hospital to home. From the moment she arrived at their apartment, Aylin received 16 hours of nursing care every day, split between day and night shifts.
Aylin had very complex medical needs in the beginning. She was on a ventilator, required continuous feeding and suction overnight, and needed the more invasive kind of feeding tube because of a weak epiglottis and severe reflux, putting her at high risk of aspiration (drawing liquid into the lungs).
Even though she’d received medical care training in the hospital, Yenni still felt afraid to be alone at first. “Everything was new to me as a first-time mother, but the nurses helped me a lot. Having them there with me at home helped me feel more comfortable with my baby.”
Yenni also really appreciated their nurses’ help making phone calls and doctors’ appointments while she was building her fluency in English. Aylin’s clinical manager and other nurses on her team were bilingual, making it easy for the new mother to ask questions and feel understood.
Health challenges: from overwhelming to overcoming
Just like many children with congenital diagnoses, Aylin was delayed on her early developmental milestones, such as sitting up, due to muscle weakness from having been bedridden in the hospital. But her physical therapist worked with her over time.
Soon, Aylin was receiving multiple speech, physical, and occupational therapies and early intervention at home with a teacher who kept her moving along with her milestones and helped to encourage her to speak—something that’s not easy to do with a breathing tube.
Despite her medical fragility, Aylin’s parents always had high expectations for her to grow up just like any other child. They never took no for an answer, especially her dad. With ingenuity and a lot of zip ties, he made Aylin a custom walker and a customized little red wagon, so she could bring her medical equipment on a walk or to the park and be as active as her family and peers. “We went everywhere. We went sledding, we went tubing, we didn’t let anything stop us,” Yenni remembers.
Maite Roman, LPN was one of Aylin’s day nurses at the time. “Aylin’s level of activity and mental acuity kept us on our toes. She was always moving, and even though she was on a trach tube and feeding tube, she still wanted to get into things and put everything in her mouth. We had to be vigilant with her safety precautions. It was scary at times, because if her GJ tube came dislodged, that’d require a trip to the hospital. Once she graduated to a button GT (a less invasive feeding port, or gastro tube, at the upper stomach), we could relax a bit.”
By the time Aylin went to preschool accompanied by her BAYADA Nurse, she still had her stoma (surgical openings in her throat and belly), but she was breathing independently and could travel the halls tube-free, with a backup ventilator at the ready.
Here comes Aylin!
By the summer of 2019, Aylin had her tubes removed completely and graduated from home health care services. Other than her heart condition, Aylin is a healthy, normal child, with all the same energy and curiosities as her peers. Now at the age of seven, she and her family no longer need daily support, and Aylin is in first grade with an individualized education program (IEP). She has at least one more surgical heart procedure ahead of her, but it will be a lot easier than those in the past.
“We’re doing so good now!” Yenni exclaims. “She doesn’t need meds. She doesn’t need oxygen. She eats solid food. She doesn’t get sick. God has blessed us.”
Lessons learned
“Aylin’s parents are the most hospitable and loving family I’ve ever met, and I learned so much from them,” Maite reflects fondly. (They still attend all of each other’s extended family birthday parties.) “I learned that achieving a child’s best possible outcomes has a lot to do with their environment. Aylin’s mom and dad always pushed her, and they were very consistent. Every day they’d find ways to motivate her to move and to walk.”
She adds, “Sometimes I was afraid Aylin would get hurt, but Yenni and Junior knew what was best for their daughter, and they never made her feel sheltered or limited. They never let overprotectiveness get in the way of her progress.
From working with Aylin, I see that no matter how much you may know medically, as a clinician, you’re never going to know a child like her parents do.”
How you can help: Hayden’s Heart Superhero 5K
Raising a child with special medical needs is never easy. Hayden’s Heart is a charitable nonprofit organization founded by the Dorsett family, whose son Hayden also was treated at CHOP in 2012 for congenital heart disease (CHD) and succumbed to his illness at the age of five months. Every year, they choose a family to be the beneficiaries of their Superhero 5K, to help with the significant medical expenses associated with CHD. Aylin was nominated by her BAYADA Clinical Manager and chosen as their 5K honoree in 2017.
To support families like Aylin’s as a donor or participant—visit haydensheart.org.
