Micah’s journey began with some unexpected twists and turns, before he even entered this world.
“Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.”
Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta.
Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to specialists in orthopedics, cardiology, audiology, ENT, hematology/oncology, ophthalmology, pulmonology, rheumatology, and beyond, Micah has received comprehensive care.
Micah’s treatment isn’t confined to a single location. Nemours Children’s Health, Collegeville serves as their primary care hub where Micah sees Dr. Zapotok, while speech therapy sessions with Michelle Troise take place at Nemours Children’s Health, Malvern. Most specialized care, however, is centered at Nemours Children’s Hospital, Delaware. Despite the logistical challenges, Kaitlyn emphasizes the seamless coordination and unwavering dedication of Micah’s care team.
At the heart of Micah’s care is the Trisomy 21 Clinic, which they’ve visited three times since his birth, with another appointment scheduled soon. During these visits, Dr. Hamilton Powell reviews general medical screenings for children with Down syndrome. Micah also sees Karen Josefyk, MSR, PT, PCS, a physical therapist who evaluates his developmental progress and provides tailored recommendations. Additionally, they meet with a psychologist to discuss any behavioral concerns and a social worker to explore available resources.
The Cleft Palate team has also played a crucial role in Micah’s care. When Micah was around 1 year old, an ENT specialist suggested he might have a cleft palate. It was confirmed that Micah has a submucous cleft palate after a visit with Dr. Caterson and the plastic surgery team at Nemours Children’s Hospital, Delaware. The team, including Linda Vallino, a cleft palate-craniofacial speech pathologist, sees him annually.
Orthopedic care has been essential since Kaitlyn’s pregnancy when they discovered Micah would be born with a left club foot. After his birth, Dr. Franzone and her team began treating him while he was in the CICU at Nemours Children’s Hospital, Delaware. Initially, Micah underwent weekly serial casting and then frequent visits every 6-8 weeks for his boots and bars. He now sees Dr. Franzone every 10-12 weeks. Recently, Micah received SMO’s to support his ankles and assist with walking.
Dr. Zaidi and the cardiology team at Nemours have also played a significant role in Micah’s care. Following his cardiac surgery in January 2022, Micah has had several follow-up appointments. Now, with his aorta appearing normal, his cardiology check-ups have been spaced out to once a year. Each December, he undergoes an EKG and echocardiogram to monitor his heart health.
“Our experience with Nemours has been amazing,” shares Kaitlyn. “I highly recommend Nemours to everyone who asks about who we do care with, including our PCP office in Collegeville. I love that each individual doctor cares about Micah and wants to do what’s best for him and what will help us from now until he is older with everything Micah is currently going through. I can tell all doctors want to listen to what I have to say about Micah’s conditions and the concerns I may have. They base his care on what is current and the concerns I may have in the future.”
Looking ahead, Micah’s family remains committed to his ongoing care at Nemours. “We will continue care at Nemours for everything Micah is going through and may come up as he continues to get older,” shares Kaitlyn. “We are working hard with many doctors, especially his speech therapist, Michelle, to get him eating normally without a feeding tube in the future.”
Kaitlyn shares, “I would encourage other families in similar situations that everything will be okay and to continue with up-to-date appointments. I know not all Down syndrome children are medically complex, but if this family’s child was, it is important for them to know that all doctors will care for their child. It’s a lot of scheduling and coordinating, but I wouldn’t want it any other way and we could never imagine Micah not in our lives. As scary as it is, God has given us the gift of Micah and we leaned in closer to God for Micah’s care and protection.”
