Thursday at St. David’s Women’s Center newborns there were given red knit caps in honor of American Heart Month. The Little Hats, Big Hearts program started in Chicago in 2014 and now has expanded to more than 40 states. It’s a program of the American Heart Association and the Children’s Heart Foundation and supported locally by the St. Jude Medical Foundation.
Heart disease, of course, is the No. 1 cause of death in the United States. While we don’t think of heart problems and babies, more than 40,000 babies a year are born with a congenital heart condition.
Doctors are increasingly able to detect many conditions including congenital heart defects in utero. A new study from Wellcome Trust Sanger Institute in Cambridge, England, studied more than 4,000 children and their families and found 14 new genes that are responsible for developmental disorders.
We talked to Dr. Sina Haeri, director of perinatal research and co-director of maternal fetal medicine at St. David’s Women’s Center of Texas, about what he’s seeing locally and what early interventions doctors are now able to do.
“Medicine is advancing exponentially,” he says.
Doctors now regularly do an ultrasound of a fetus at 11 or 12 weeks gestation and then again at 18 to 20 weeks gestation. That first ultrasound is key to picking up many anomalies. For example, if there’s something wrong with the heart, the baby’s ultrasound might show that. Doctors can then schedule genetic testing microarray through an amniocentesis to look at the genes to see if the structural problem might be part of a larger syndrome.
That information gives doctors the ability to have a frank conversation about what parents can expect when that child is born. It also allows parents to start meeting with pediatric specialists to build a relationship with those doctors.
Sometimes people express that they don’t want to do the amnio, Haeri says, because they think the conversation is going to be only about whether or not to terminated the pregnancy, but that’s not the case, he says.
Instead, he wants parents to have as much information as possible, to understand possible outcomes, to get all their resources lined up. Sometimes, he says, his patients have been able to alter their life course because of the information. He gives the example of one family that was considering buying a property outside of Austin, but when they realized that their child would be spending a lot of time at Dell Children’s Medical Center, they opted not to move that far away.
Often any surgical treatments that need to done will be done three to six months after birth unless it is extremely life-threatening and then it can be done within hours after birth. Doctors do like to wait until that 3 to 6 month age because of babies’ immunity and ability to better withstand medication, anesthesia, loss of blood and procedures, Haeri says.
Sometimes some surgical procedures can be done while the child is still in the womb. Doctors have been able to treat conditions like spino bifida and severe anemia before the baby is born.
Eventually, the hope is that within five years, doctors will be able to treat some congenital conditions with gene therapy in the womb, though, Haeri thinks that many conditions still will be irreversible.
Of course, some of Haeri’s worse days are when he has to tell a family that their baby has a fatal condition. Then they talk about termination or palliative care.
With anything, Haeri says, they can never be 100 percent sure. “Miracles happen,” he says. “We get humbled on a regular basis.”