It was once rare for children with Down syndrome to undergo surgery to repair heart defects that are frequently associated with the disorder. Now, many of these children receive heart surgery.
“Back in 1975, folks would’ve said there’s nothing we can do to help those babies. But now people have proven if you do heart surgery early, patients with Down syndrome can live to adulthood and be active members of their community. The difference it makes for them is tremendous,” Stanford pediatric cardiologist Thomas Collins, MD, said in a School of Medicine press release.
Collins believes new research might help change attitudes about performing surgery for other babies who, like Down syndrome babies, are born with a third copy of a chromosome — in this case babies with trisomy 13 or trisomy 18.
In a recent study in Pediatrics, Collins and colleagues from University of Arkansas for Medical Sciences showed that heart surgery can more than double the lifespans of babies with trisomy 13, also called Patau syndrome, or trisomy 18, also called Edwards syndrome.
Yet birth defects and disabilities are far more severe in Patau and Edwards syndrome babies than they are in Down syndrome babies who can live well into adulthood. Many Patau and Edwards syndrome babies die within hours or days of birth and most don’t live past a year old.
The news release explained that current care protocol for these infants mostly involves using blood pressure medication, ventilators and intravenous fluids; surgery is rarely an option given to parents. "The thought has been it doesn’t make sense to undertake a major heart surgery if the patient’s death within a few months is a near certainty," Collins said in the release.
Extending their lives means they still might not live past the age of 2, but even that small improvement gives parents more precious time with their children and more options for their care, Collins pointed out. It also gives specialists more time to develop treatment for other health issues in these babies.
Collins said he hopes the research will change how doctors approach treating Patau and Edwards syndrome babies and, once heart issues are addressed, clear the way for determining how to treat other health issues these babies experience.
"Surgery gives parents the option to say, 'We’re going to do everything we can for our baby,'" Collins said. "And, now we've shown that heart surgeries could allow parents to take their babies home from the hospital, and have them for two years or beyond, as opposed to two weeks."