In February 2017, Spence-Chapin received a phone call regarding a baby boy born with Giant Nevus. Over 50% of the baby’s skin was covered with nevus, a mole-like birthmark covering a significant portion of his chest and arms. His parents did not have the financial resources to care for a child with significant medical needs, and knew that he would have a difficult time being accepted within their community.
Spence-Chapin provided the birth family with ongoing counseling and supportive services as they made an adoption plan. While in the neonatal intensive care unit, Keagan experienced one subclinical seizure, received an MRI and was diagnosed with neurocutaneous melanosis, a serious condition in which the nevus cells are present in the brain, potentially causing additional seizures and pressure. Keagan was transferred to a Pediatric Center for further care and monitoring. While Keagan was being cared for at the pediatric health center, Spence-Chapin identified an adoptive family.
Keagan’s adoptive mother had experience with special needs, had two older adopted children and, best of all, she fell in love at first sight upon seeing Keagan’s photo. She quickly identified the Nevus expert in her area and connected with support groups online. On the day of placement, Keagan’s adoptive mother arrived at the hospital for his discharge, where she met directly with his entire medical team. She had already purchased Nevus-friendly clothes for Keagan to make sure he was comfortable because the nevus covered areas do not have typical sweat glands. Keagan’s birth mother reached out to Spence-Chapin following the placement to say that she feels “peace” knowing Keagan is in good hands.
Spence-Chapin continues to receive updates from Keagan’s adoptive mom. In 2020, she let Spence-Chapin know that Keagan was the poster child for an international Nevus conference. He has also been featured in People magazine. He is walking and talking and loves kayaking, swimming and getting into everything. He adores his brother and sister and they him. Keagan wears a hearing aid, which has helped him tremendously in learning new words, and he has been discharged from occupational and physical therapy. He has not had any further issues from the nevus on his brain but continues to receive routine MRIs.
In an email to Spence-Chapin, his mom wrote:
“He’s an incredibly intelligent child; astounds all who know him, including doctors. Add to that his wit and charm and he’s pretty irresistible…I love him, I adore him and I’m forever grateful to you for placing him with us.”
This story is part of our Special Needs Adoption Program Story series, commemorating 25 years of our Special Needs Adoption Program. We are celebrating these stories and more throughout the month of November for National Adoption Month. If you would like to support programs for children and families like our Special Needs Adoption Program, please visit www.spence-chapin.org/donate or contact our Development Office at 212-360-0263. Thank you!
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