Round the Clock Family - Centered Care for Newborns with Genetic Disorders

Many newborns infants with newborn genetic disorders are very sick and require extended specialized care. At University Hospitals Rainbow Babies & Children’s Hospital, we know every moment counts with these precious lives. We understand parents want to spend as much time as possible with them and research even tells us babies heal better when family members are close.

Because parents may be spending days, weeks or even months with their baby in the hospital, we have made our setting as home-like as possible, so families are more comfortable during their time here.

Between our Level IV neonatal intensive care unit (NICU) and Transitional Care Center, all but two of our 82 newborn beds are in private rooms. This allows families to have quiet bonding time in a home away from home.

Newborn Genetic Disorders We Treat

Our expert team of neonatal specialists at UH Rainbow Babies & Children’s Hospital treats many different genetic disorders, from more common to the most complex, including:

• Chromosome disorders: Conditions caused by changes to a baby’s genetic material, such as Down syndrome or Turner syndrome.
• Congenital adrenal hyperplasia: A group of hereditary disorders that affect the adrenal glands.
• Congenital heart defects: With expert and specialized care for any congenital heart defect, our team treats the full range of congenital heart conditions.
• Cystic fibrosis: A progressive lung disease that causes mucus to build up in the lungs.
• Tay-Sachs disease: A disorder that causes fatty compounds to build up in the nerve cells of the brain.
• Thalassemias: A blood disorder that causes the body to produce fewer red blood cells and less hemoglobin than it should.
• Type I diabetes: A condition caused when the pancreas stops making insulin, a hormone that helps the body’s cells use sugar for energy.

Because these disorders are caused by an infant’s genes or genetic make-up, these conditions often are not curable, but many are treatable. When identified early–either before or soon after a baby is born–proven interventions such as neonatal surgery, medications or other types of treatment can be used to prolong and improve a newborn’s quality of life.

Manage Newborn Genetic Disorders with a Long-Term Partner

Our support doesn’t end when your newborn leaves our hospital. UH Rainbow Babies & Children’s team of specialists provides care to children with genetic disorders through adolescence, up to age 22 and older if necessary. This means we’ll have a comprehensive record of your child’s health history, treatments and other important information at our fingertips. So, instead of spending time figuring out the past, we’ll be able to focus on the present and what’s ahead. Our UH Rainbow Babies & Children’s Hospital is consistently ranked as a top children’s hospital in the nation. For the convenience of our patients and families, many ongoing treatments and appointments can be made at one of our many locations across northeast Ohio.