There is a burgeoning group of women born with complex congenital
heart disease who are now of childbearing age and want to get pregnant. For generations, doctors told women who were born with complex
congenital heart defects that the physical demands of pregnancy and
delivery would be too difficult for them, and that they should not have
That mindset has shifted. New recommendations for health care providers, published in the American Heart Association journal Circulation
, offer a road map to helping women with congenital heart disease have successful pregnancies.
‘New advice for health care providers, published in the American Heart Association journal Circulation, will help women with congenital heart defects navigate pregnancy smoothly.’
Mary Canobbio, a nurse at Ronald Reagan UCLA Medical Center and
lecturer at the UCLA School of Nursing who chaired the group that wrote
the scientific statement, said, "The problem is, pregnancy in this population
is very risky."
Recently, Canobbio has seen a growing number of women with congenital heart disease who wanted to have children.
"We really didn't have any data to refer to in order to help them
make safe, informed decisions," she said. "So I went on a mission to see
if we could come up with some definitive answers for these women about
the likelihood of becoming pregnant and steps we might need to take to
help them deliver their babies safely."
Canobbio collected data from hundreds of colleagues around the
country, charting successful pregnancies and analyzing the approaches
that were taken to care for these high-risk patients.
The information she gleaned also came from - and aided - her own
patients. Erica Thomas, 37, of Fountain Valley, California was born with
a complex heart defect.
"I was always told that having children wasn't an option," Thomas said. "But I was determined."
Working with doctors and nurses at UCLA, Thomas has given birth to two healthy babies in the past five years.
"We found that if women's heart health is stable at the onset, we
can get them through pregnancy," Canobbio said. "But that doesn't mean
that they're not at risk for complications. We need to have a lot of
people in place in order to ensure that we manage their care at an
optimum level, at every stage."
The journal article lists recommendations for women with congenital
heart disease - before and during pregnancy, during delivery and
Before pregnancy. Before conceiving, women should undergo extensive
counseling with a cardiologist and an OB-GYN specializing in high-risk
pregnancies. When appropriate, doctors may also refer them to genetic
counseling. The paper also recommends that women undergo
electrocardiograms, echocardiograms and exercise stress tests to assess
their physical condition prior to conception.
"The burden of pregnancy is huge," Canobbio said. "We want each
woman to understand the risks before she ever considers pregnancy, and
understand the effect it might have on her heart in the long run."
During pregnancy. According to the recommendations, once a woman
with congenital heart disease becomes pregnant, she should be monitored
closely by an OB-GYN, a cardiologist and a specialist in maternal-fetal
"We need to keep close tabs on the mother after conception, because
her heart isn't in optimal condition, and it needs to work extra hard ,"
said Dr. Brian Koos, a high-risk OB-GYN at Ronald Reagan Medical Center
and a co-author of the recommendations.
"During pregnancy, there is increased blood flow, or 'cardiac
output,' to the mother's organs and to the uterus and the placenta,"
Koos said. "We need to make sure the heart is strong enough to sustain
both mother and baby."
Delivery. Because teams of specialists need to be in place during
delivery, the statement recommends writing birthing plans and key dates
and distributing them to team members between weeks 28 and 32 of the
pregnancy. The report also recommends that women go to large medical
centers with the staff and resources to manage any complications that
"Vaginal births are preferred, but C-sections may be necessary for
obstetric or cardiovascular complications," Canobbio said. "The main
thing is we are all there and waiting for delivery, and if that hasn't
happened by the 39th week, we will induce labor."
The paper recommends having a heart surgeon, in addition to an
OB-GYN, available during the delivery. This is a critical time, because
not only is childbirth a huge strain on the mother's heart, but doctors
see for the first time how the baby is able to function outside of the
"Just because the baby is born healthy doesn't mean the mother is out of the woods just yet," Canobbio said.
Postpartum. Because of the strain of childbirth, the authors suggest
that women be closely monitored by their cardiologist for at least six
weeks - and in some cases, for up to six months - afterward.
During birth, a normal, healthy heart will see a 70 to 80%
surge in the volume of blood pumped out of the left ventricle and the
overall amount of blood sent through the cardiovascular system.
"That's a lot of stress," Koos said. "And because the hearts of
these women are compromised to begin with, it can lead to damage and
long-term issues after birth."
Canobbio said the process requires proper planning and sufficient resources.
"But the good news is, for many of these women, pregnancy is
possible," she said. "Instead of having to tell them they can never
become pregnant, with these recommendations in place, we can now give
them data-based information and, possibly, new hope for having babies."