We are looking for a loving family for an adorable 1 year old boy named Michael* who was born in October 2023. Michael was diagnosed with a rare genetic disorder, Kabuki Syndrome, after his birth and spent several months in the hospital NICU. He is currently cared for at a specialized children’s rehabilitation facility where he is receiving therapy until his adoptive family can be identified.
Michael is described as a “sweet” boy who loves to be held, cuddled and rocked. He is responsive to human touch, voices and sounds in his environment. He enjoys head rubs and responds with smiles and cooing sounds when soothed. When stimulated by music or sounds he moves his head from side to side and smiles with delight. An alert and playful baby, Michael enjoys tummy time and holding his stuffed animals close. He has a strong grasp, explores with his fingers and enjoys his pacifier.
Michael was born with the following diagnoses:
– Kabuki Syndrome, a rare genetic condition where children typically have distinctive facial features, mild to moderate mental impairment and growth delays. Kabuki Syndrome can also affect other body systems, including the heart, intestines, kidneys, and skeleton. There are a broad range of developmental outcomes. Michael’s developmental delays are expected to be mild to moderate.
-Imperforate anal atresia stenosis; this condition will require a corrective surgery within the next two years
– Coarctation of aorta s/p (side/ post-operative treatment) repair
– Bicuspid aortic valve
– prematurity
– anterior laryngeal web without obstruction
– history of TACO (transfusion-associated circulatory overload)
– bilateral renal calyceal dilation with hydronephrosis
– Chronic Respiratory Failure
– Hydroureter Nephrosis
– Pulmonary Artery Hypertension
– UPJ Obstruction
– Mitral Stenosis
– Oral Feeding Difficulty
-Vision impairment
Michael is stable and currently on oxygen, which may be necessary for up to two years of age.
Also, a G-tube was placed for feeding, and it is unknown at this time if the G-tube will be permanent or if he will be able to take solid food when he gets older.
Michael is being followed by specialists in Cardiology, Nephrology, Urology, Orthopedics, Neurosurgery and Ophthalmology. Some specialist visits will be ongoing as he develops.
We encourage families to speak with their pediatrician as to his care and anticipated needs as he grows.
ADOPTION PLAN:
Michael’ s parents have been by his side since birth and want the best life for him. They wish to make an adoption plan through Spence-Chapin’s Special Needs Adoption Program and are open to all qualified and experienced families. They would like to see him placed with a loving family who will provide the one-on-one attention and care he needs and deserves to thrive. His parents would like to have an open adoption which would include in-person visits.
If you would like to be considered as a forever family through Spence-Chapin’s Domestic Special Needs Adoption Program, please submit our free Domestic Special Needs Adoption Pre-Application and upload a copy of your current home study (home visit completed within the past 12 months), conducted by a licensed adoption agency and upload a copy of you adoptive family profile. Families living anywhere in the United States are welcome to apply. We are unable to consider families that do not have a current home study, or a home study completed by an independent social worker.


*Name has been changed. In order to maximize the placement opportunities for Michael, his birth parent has authorized Spence-Chapin Services to Families and Children to post this non-identifying description of him on the Waiting Children page of Spence-Chapin’s website.