Recovery & Support for Children with Congenital Heart Defects

At NYU Langone’s Pediatric and Congenital Heart Program, our pediatric cardiac surgeons, cardiologists, nurses, and other specialists work as a team to care for children and newborns with congenital heart defects. 

Through the Sala Institute for Child and Family Centered Care, our staff ensures that your family has access to many resources available to support you and your child throughout diagnosis and treatment. These include child life services, social work, and other wellness services.

NYU Langone doctors are committed to ensuring that children with congenital heart defects receive the ongoing care and support they need throughout life. As your child grows, our specialists can assist him or her in the transition to adult specialists in congenital heart disease.

Child Life Services

NYU Langone’s Hassenfeld Children’s Hospital offers a variety of inpatient wellness programs to support children, their siblings, and their parents during treatment for congenital heart disease. Services offered while your child stays in our pediatric intensive care unit include creative art therapy, nutrition, pain management, palliative care art therapy, music therapy, pet therapy, yoga, social work, psychology, and chaplaincy services.

NYU Langone child life specialists make use of play and other therapies designed to help children adjust to being in the hospital. Our child life staff provides special sessions for siblings as well, to prepare them to visit a brother or sister in the hospital.

Wishful Hearts NYU Langone

Wishful Hearts NYU Langone is an informal support group for parents of children with congenital heart disease. The group meets on the first Wednesday of every month from 10:30AM to 12:00PM in the Laurence D. and Lori Weider Fink Children’s Ambulatory Care Center conference room, located at 160 East 32nd Street. 

This group helps: 

  • connect families who have a child with congenital heart disease 
  • educate people about congenital heart disease and the challenges faced by children and their families
  • offer a way for families to express their feelings and learn to cope with and understand their child’s illness

If you have questions or need more information, please contact social worker Mary Ann Harris at 212-263-9624.

Feeding and Swallowing Therapy

Surgery and other treatments for congenital heart disease can interfere with a baby’s ability to eat. Feeding therapists from Rusk Rehabilitation can evaluate your baby’s ability to suck and swallow. They provide inpatient and outpatient therapy to help your child eat safely by mouth.

Neurodevelopmental Support

Children who have had surgery for heart disease during infancy are at greater risk for developmental delays, including motor, cognitive, and speech delays. Our experts provide screening, evaluation, and care for infants and children with congenital heart disease who are at risk for developmental problems. Screening begins soon after your child’s first cardiac procedure and continues every six months for up to two years to make sure he or she is reaching the appropriate developmental milestones.

If needed, our neuropsychologists can refer your child to occupational, physical, and speech therapists at Rusk Rehabilitation or other specialists in your community who can help your baby reach key developmental milestones, such as walking and talking.

Interstage Single Ventricle Home Monitoring

Single ventricle heart defects—in which there is only one pumping chamber in the heart, rather than two—encompass some of the most complicated forms of congenital heart disease. Single ventricle heart defects include hypoplastic left heart syndrome, tricuspid atresia, and double inlet ventricle, among others.

Infants with these defects require a series of heart surgeries to re-route blood flow to provide well-oxygenated blood to the body using the one functional pumping chamber. Depending on the type of surgery performed first for a certain defect, a waiting period may be necessary before the second surgery. During this time between procedures, the child may be at particular risk and require very close monitoring. Fortunately, many of these problems can be identified before significant problems occur with your baby.

Our Interstage Home Monitoring Program is designed to carefully follow these babies and help provide careful surveillance of their complex condition, keeping families and referring pediatricians well informed. Home monitoring equipment is provided to aid in the early detection of problems. By using a team approach during this vulnerable period before the second surgery is performed, we can decrease the number of medical problems and hospital admissions per child. 

This program combines the expertise of multidisciplinary team members to maximize health, minimize complications, improve survival, and enhance quality of life. The specialists involved in caring for patients in this program are: pediatric cardiologists, pediatric nurse practitioners, home nurses, nutritionists, developmental pediatricians, occupational and speech therapists, and social workers.

NYU Langone’s home monitoring team participates in the National Pediatric Cardiology Quality Improvement Collaborative, a national project dedicated to improving survival rates and quality of life of infants with single ventricle heart defects during the period between surgeries.

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