the little boy with the big smile who called csh home
for almost the whole first year of his life
Aydin has a smile that can melt even the coldest of hearts. You would never be able to tell just how rough this sweet baby’s beginning was. The day Aydin was born he was put on an Extracorporeal membrane oxygenation machine (ECMO) this was a result of life-saving measures taken after his tiny heart went into cardiac arrest. On that same day, he received a tracheostomy, had pneumothorax also known as air in the lungs, and a lacerated liver.
Aydin was diagnosed with C.H.A.O.S (Congenital High Airway Obstruction Syndrome), laryngeal stenosis, VSD (Ventricular Septal Defect), and an inverted anus. CHAOS affects the airway preventing one from breathing on their own. Aydin’s vocal cords are also 99% fused together, in his case, allows him to eat by mouth.
The months that followed Aydin’s birth were filled with uncertainty and stress for his parents, Yadilsa and Jamal Martin. Aydin had multiple surgeries and procedures early on in his life. At three-and-a-half months, he had open heart surgery to correct a VSD and a double chamber right ventricle. He was in the NICU for five and a half months and they knew that Aydin would ultimately be coming home on a ventilator. After working with their social worker at New York University (NYU) Langone to find the best place for Aydin’s rehabilitation, it was determined that Children’s Specialized Hospital (CSH) was the perfect fit. Aydin was discharged from NYU on January 19, 2022, on Yadilsa’s birthday.
CSH is where the Martin family spent almost the first entire year of Aydin’s life—where Yadilsa and Jamal experienced parenthood for the first time. Picking up and essentially moving into CSH was a huge adjustment for first-time parents. CSH is approximately an hour and a half away from the family’s home, but they knew it was where Aydin needed to be. The new parents only slept in their bed at home two days out of the week--the rest of the nights they were by Aydin’s bedside. Fortunately, for the first three months, they were able to stay with a family member who lived only seven minutes away from CSH.
“We had to learn to trust a new place with providing the best care for our child. Once we realized how incredibly caring the entire team was at CSH, it was smooth sailing,” said Yadilsa. “We all had a goal in mind, to train us to the best of our ability, to get Aydin home. We weren't going to rush the process, because we wanted what was best for HIM.”
The Patient and Family Nurse Educator program at CSH prepared the Martin family for life after CSH. This program provides direct hands-on education for patients and families on the successful use of equipment so they can safely and confidently go home from the hospital. It is vital to the health of so many medically fragile children like Aydin but unfortunately, it is not covered by insurance.
Thanks to the support of our generous donors and a $60,000 grant that was awarded by Johnson and Johnson more than half the cost of the program was covered last year. CSH has employed a full-time PFNE (Patient and Family Nurse Educator who provides instruction to families on a variety of topics including tracheostomy care, medications, gastrostomy care, ostomy care, ventilator management, catheterization, and central line care. Over 400 patients at our New Brunswick inpatient hospital received these critical training sessions in 2020.
“Aydin probably wouldn't be alive if it hadn't been for all the preparation we received at CSH. Every single training we received, we employed within the first two weeks of Aydin being home,” said Yadilsa. “Although we were approved for 24-hour nursing, it was a struggle to receive consistent care. We trained every single nurse, most had never worked with pediatric patients, and others didn't know how to work with his "attachments" (closed suction, enteral feeding, properly reading his medications, the vent, etc.). Within the first month of being home, we had to bag him, perform CPR, do an emergency trach change, change the circuit, and make him portable because the EMS didn't know how to. By the time August rolled around, we knew we could handle whatever was needed not only to keep Aydin alive but to help him thrive and grow!”
During his six months at the CSH New Brunswick inpatient hospital, Aydin received physical, occupational, speech, and recreational therapies. He had a strict schedule during his stay and as a result, reached many milestones. He was able to spend some play time out of his crib and on the floor and his parents were able to give him his first bath with water. Aydin’s parents recall having to learn to trust themselves to manipulate the vent circuit when picking him up. They began to see their baby improve for the first time since his birth. One of the biggest obstacles that Aydin overcame while at CSH was his huge aversion to things in his mouth. The family gives credit to his speech therapist Jojo for doing her very best to stimulate him orally. By the end of Aydin’s time at CSH, he was able to have tastes of breastmilk.
Aydin’s parents described him as a loving baby during his time at CSH. For him, everything was his favorite. He loved the many visits that he would have throughout the day from his nurses, doctors, therapist, and other staff, including Dr. Matthew McDonald, President, and CEO, Children’s Specialized Hospital. “Every hospital should have a Matt (Dr. McDonald),” said Yadilsa. “It was a pleasure to see him pick up a child because they were crying and to see him feeding the child. He made it a point to get to know the families as well as the patients. “
The Martins recalled their top three favorite things about CSH. “Number one without a doubt is the people! Second to that was Susan (the volunteer who read to Aydin once a week), and the third was the food! We loved not having to worry about food while we were with Aydin.”
Aydin was able to finally be discharged from CSH and go home for the very first time just two weeks shy of his first birthday. Since leaving CSH Aydin’s physical strength has greatly improved. He can sit up without support, turn himself when he's lying in bed and he can grab certain toys and play independently. The biggest thing has been him standing up by himself in his crib.
Aydin loves books and being read to. He entertains himself with the simplest of things. A plastic water bottle (he likes to squeeze it and try to open it to drink water out of), a napkin, and a string. The world truly is Aydin's playground. He also enjoys cuddling, music, and now even dances and stomps his little feet.
Today at one- and a half-year-old Aydin is thriving and receiving therapies through an Early Intervention program in New York where he lives. The Martins' greatest hope for their son is that he will lead an independent life and reach his fullest potential. “We want him to grow and thrive and be an exceptional human,” said the parents.
“Overall, if we could donate a bunch of money right now to the CSH Foundation, we would. CSH changed our lives. We met incredible people. The love, care, and compassion we were shown is unmatched.”
Aydin is home with his family and thriving today because of people like you who truly care.. When you give to Children's Specialized Hospital Foundation, 100% of every gift supports the vital programs and services that are helping kids like Aydin recover from unthinkable and often sudden medical crises. Consider a monthly gift of just $15 to make a life-long impact for countless children and families who are facing complex medical challenges.