When Sarah’s parents first learned about their unborn daughter’s diagnosis, they faced a future filled with unknowns. Sarah was diagnosed with arthrogryposis while still in utero, marking the beginning of a journey that would require extraordinary medical expertise. “Upon learning that our unborn child would have a physical disability, we began trying to plan for the unknown,” shares Sarah’s mom, Kerstin. “We soon realized that the unknowns would continue, and we had to embrace each one as they came.”
Finding the Right Team
As Sarah grew, so did the challenges. “Life changed and we sought out the best for Sarah,” Kerstin explains. “She had difficulty eating, difficulty moving her limbs, and was not meeting the developmental milestones. As she grew and became more complex, we realized we needed a more comprehensive team of doctors.”
At an arthrogryposis conference, the family met orthopedic surgeon, Dr. Reid Nichols and physical therapist Reenee Donahoe from Nemours Children’s Hospital, Delaware. “We knew right away that is where we needed to be,” says Kerstin. The decision to choose Nemours Children’s would prove life-changing, even though it meant traveling 10 hours every three to six months.
As Sarah grew, the complexities of her condition became increasingly apparent. An MRI at Nemours led to a crucial discovery. “The team discovered a polymicrogyria and consulted with doctors around the country to solidify the diagnosis,” shares Kerstin. Sarah’s primary diagnoses—arthrogryposis and polymicrogyria—along with numerous related conditions, would require a level of specialized care.
The providers at Nemours assembled a comprehensive team to address Sarah’s complex needs. “During our visits, Dr. Nichols suggested we see neurology, and we grew her team from there,” Kerstin shares. Today, Sarah’s care team reads like a testament to collaborative medicine: orthopedics specialists including Dr. Nichols, Dr. Ty, Dr. Owens, Dr. Gabos, and Dr. Brislin, along with the Gait Lab Team; therapists Anne Miscia, Reenee Donahoe, Karen Josefyk, Charlie Cericola, and Gianie Perez; neurologist Dr. White; rehab specialist Dr. Shieh; gastroenterologist Dr. Kutsch; urologist Dr. Hagerty; consultative pediatrician Dr. Bleznak; and teams in genetics, and ophthalmology.
A Different Kind of Hospital Experience
Sarah’s family often makes the journey to Nemours for what Kerstin describes as “a whirlwind three-four weeks” filled with tests, casting, discussions about surgeries, and procedures. Despite the intensity of these visits, Sarah shows up with enthusiasm. “Sarah is always happy to come to the hospital and loves seeing her team,” Kerstin shares.
What makes Sarah’s experience at Nemours different is the personal touch in every interaction. “She is always greeted by name by the ortho desk (who are fantastic),” says Kerstin, “and even when we don’t have appointments with specific doctors, we see them in the halls and they always stop to say ‘hi.’” The Nemours team always looks forward to Sarah’s visits. “Kerstin makes the BEST chocolate chip cookies to share with the team!” says Dr. Nichols. This culture of genuine care transforms a medical environment into a place where Sarah feels valued and welcome.
Care That Considers the Whole Child
For families, one of the greatest sources of anxiety can be the feeling that their child is being treated as a collection of symptoms rather than as a whole person. At Nemours, Sarah’s family found something different. “It is so comforting to know that all the doctors are considering Sarah as a child and not as a number,” Kerstin emphasizes. Additionally, Sarah’s care team operates as a team. “Most importantly, they talk to each other across departments,” says Kerstin. “I remember many times when doctors would comment about checking in with other departments to make sure they are making the best plan for Sarah.” This collaborative approach ensures that Sarah receives coordinated care that considers all aspects of her health.
While every member of Sarah’s team has contributed to her progress, certain aspects stand out as particularly transformative. “Dr. Nichols started us on this journey and I am so grateful for her,” says Kerstin. “She takes the time to listen to patients and families, use her amazing expertise, and works as a team.”
Pediatric gastroenterologist, Dr. Erika Kutsch’s expertise helped Sarah achieve healthy nutrition through a gastrostomy tube—a crucial step for a child who struggled with eating. Chief of Urology, Dr. Jennifer Hagerty’s recommendation of the Interstim procedure proved to be genuinely life-changing, helping Sarah with control throughout her day. “There are too many of these instances to name each one,” Kerstin reflects, “but I don’t know where we would be without the team at Nemours.”
Looking Forward with Confidence
Now 10 years old, Sarah’s journey is far from over. “We kid that there is always something new when we come to appointments,” says Kerstin. “I know that no matter what comes our way, we have the absolute best care possible for Sarah. We will continue to make the trip to see our favorite doctors and team!”
For families facing similar journeys with complex diagnoses, Kerstin offers this advice: “Don’t settle for ok. Always find what is best for your child. While there may be challenges and your life may not look as you imagined, embrace each day, and find the team that cares and has the knowledge to give you and your child the best. The team at Nemours is so special to our family, and have brought so many positive changes, we can’t imagine life without them!”
