Cyanotic cardiac disease refers to a complex group of heart defects present at birth.
Patients with cyanotic cardiac disease require highly specialized care. Hospital stays are usually prolonged, resulting in decreased activity, generalized weakness, and difficulty feeding. The treatment of choice for most patients is surgery to repair the defect. This surgery may be performed right after birth or delayed for months depending on the cardiac defect. Other treatments include medications, feeding therapy, and oxygen therapy.
Children’s Specialized Hospital has an expert, multidisciplinary team in place to provide rehabilitation services for these infants, before and after surgery. Team members include physicians; skilled nursing staff; occupational, physical, speech/feeding, and child life therapists. Additionally, patient care coordinators and psychologists provide support for the family.
Most patients enter our program from a referring hospital’s neonatal intensive care unit, and their cases are reviewed in detail prior to admission. Our team confers with the pediatric cardiologist about the child’s condition, and what care they’ve had or might need in the future.
At Children’s Specialized Hospital, our unique clinical tracking system provides a customized rehabilitation program and plan of care for each patient. Upon admission our medical team performs an evaluation to place patients in the appropriate clinical track depending on how well they may tolerate therapy sessions. They are reassessed weekly by our multidisciplinary team and may be transitioned from one track to another. 
Our service provides care during important transitional times before and after surgery. Prior to surgery, patients may have congestive heart failure and difficulty feeding. To prepare them for surgery, we monitor their weight and caloric intake closely. We adjust medication in close communication with the primary cardiologist, and coordinate outpatient follow up visits. We provide therapy sessions needed to build strength and endurance, and maintain patients’ developmental milestones. For those who are not ready for surgery, we make sure they are gaining weight properly and work on improving their feeding skills.
Our program also focuses on providing education to our families and caregivers in regard to their child’s condition, including medication administration, and feeding techniques. We assist in coordination for outpatient referrals for Early Intervention; outpatient physical, occupation and feeding therapy; private duty nursing or visiting nursing visits; and arrange for medical equipment if needed for home. Our health care professionals can follow up virtually with a telemedicine visit to ensure a safe transition to home.
We encourage acute care facilities to partner with us in providing the best possible rehabilitation services for infants with cyanotic cardiac disease. For more information on our program please call 1-888-CHILDRENS.