Danilo was born to Haitian parents living in a poor neighborhood of rural Consuelo, Dominican Republic, and was diagnosed with trisomy 21, a chronic condition that can manifest with a range of clinical signs and symptoms and is associated with many potential health complications.
Danilo’s mother became ill during her pregnancy and grew very sick soon after his birth, losing weight as a growth on her neck rapidly increased in size. She faced many challenges as she sought medical care, a situation that was complicated by tense family dynamics. Danilo’s mother passed away when he was just a few months old. His two older siblings were then taken in by relatives in another part of the country, and Danilo was left in the care of his father, Mesier, with limited support from other family members.
Suddenly becoming the sole care provider for a small child with a chronic medical condition was a challenge for Danilo’s father, who had limited resources and few employment opportunities. But with the support and encouragement of Marc Callender, MD, a 2011-2013 CHOP Global Health Fellow who had conducted research on paternal engagement in children’s care in the limited resource setting of the Consuelo community, Mesier grew as a father. Danilo and his father have since formed a close bond. Danilo’s first (and arguably favorite) word was “Pa,” which he often affectionately exclaims to his father, with a big smile, demonstrating their attachment.
Medical issues and follow up
As an infant, Danilo had multiple respiratory infections and diarrheal illnesses as well as moderate malnutrition, for which he was often seen in the NPS pediatric clinic; he was also followed through the clinic’s nutrition program. The NPS team continues to follow up with him during biweekly home visits, and the community nurse, lead pediatrician and current CHOP Global Health Fellow have become close to his family. Danilo had cardiac surgery at a young age at Robert Reid Cabral Hospital (RRC), a large children’s hospital in Santo Domingo. In addition, NPS has facilitated Danilo’s follow-up visits with specialists at the hospital.
Danilo has multiple issues commonly associated with trisomy 21, most notably a severe developmental delay. At 30 months old, Danilo can sit unsupported and can say a few words, but does not yet crawl, pull to stand or walk.
Although there are ample support services in some parts of the Dominican Republic for children with trisomy 21, access is limited in rural Consuelo and is made even more difficult by the family’s socioeconomic status and the challenges Danilo’s father has had finding steady employment. For much of his young life, Danilo spent his days sitting unclothed in a bucket outside his home while his father worked or talked to neighbors. Very few other children lived nearby or played with Danilo.
Teaching family how to help Danilo
However, family dynamics have recently improved, and Danilo’s maternal grandmother, aunts, uncles and cousins have been caring for Danilo during the day, as his father has found more frequent work doing construction and cutting sugarcane. Danilo now has a lot of stimulation and is surrounded by many other children, who love to play and sing with him.
Also, with support from physical/occupational therapists at CHOP, who work regularly with children with trisomy 21 in Philadelphia, the NPS team has been able to teach the family some therapy techniques to encourage Danilo to move around and interact more.
NPS also provided a mattress for the therapy, since Danilo’s home and yard are made of dirt and rocks, making it challenging for Danilo to enjoy “tummy time” and crawling. Danilo’s grandmother, aunts and cousins spend time with him on the mattress every day, and he is gaining strength and skills. He has also become more interactive and enjoys laughing and playing with his cousins and their friends.
Hope for Danilo and his family
At Niños Primeros en Salud’s recent five-year anniversary celebration, during a colorful, beautiful community gathering with the families and patients in the program, Danilo was happily passed around by family members and carried by adoring NPS team members. He smiled and laughed and even bounced along to the lively music! Though Danilo still faces chronic malnutrition, developmental delay and other health complications due to trisomy 21, as well as the challenges that come with living in a resource-limited setting, there is now much hope for Danilo and his family.