In the final week of our October theme, we hear from Dr. Gurvitz, who explores the many different options that women with CHD have, when they are thinking about starting a family.
As both a pediatric and adult congenital cardiologist, I have learned to care for all ages of patients in many different circumstances. As part of the focus on women with congenital heart defects (CHDs), I thought I would briefly share with you the stories of 3 young women seen in my clinic recently who were all considering starting families of their own. First, meet Jane. She is a 26 year old woman with a single ventricle and a Fontan procedure who felt well and came for pre-pregnancy counseling and didn’t realize her oxygen saturation of 85-88% would be a concern when carrying a pregnancy. Next, meet Alison. She is a 35 year old woman with tetralogy of Fallot referred back to clinic by her obstetrician after a 10 year gap in care as she is now pregnant in her second trimester. Third, meet Barbara. She is a 31 yo woman with shone’s complex, a mechanical aortic valve on blood thinners and moderate pulmonary hypertension who is concerned about the risks of pregnancy to herself and the baby.
The incredible success of pediatric cardiology and cardiac surgery over the past decades has resulted in excellent survival to adulthood for children with CHDs. For many young women with CHDs, with age comes the potential for pregnancy and the questions of can I have children? Do I want to start a family? What are the risks to me or my child? Will I be healthy enough to parent and to live to see him/her grow up? Many of these women will also not necessarily know where to turn for the answers, especially if these topics have not been touched upon in the teen and young adult years. Do they ask their parents? The adult or pediatric cardiologist? The obstetrician? Or do they seek answers on the internet or in social media sites?
In my practice, I have found that the answer is typically ‘yes’ to all those avenues of information or a resounding no because people are either overwhelmed or completely unaware that the heart condition may be a factor in pregnancy. While the women in the stories above and the many others that present considering starting families are different, the message we can send as healthcare providers, friends and family can be remarkably similar. That message starts with building your team before you get pregnant. The healthcare team typically consists of your congenital cardiologist (pediatric or adult congenital or both), a maternal-fetal medicine specialist (also called high-risk obstetrician) and an OB anesthesiologist (usually works with the OB team). This team of physicians can help the woman understand her heart condition, how the heart condition and pregnancy interact for both the mother and the baby, and how best to manage the delivery in the most optimal way. The team should also be able to review other options for starting a family such as adoption or in-vitro fertilization and surrogacy.
It is best to assemble this team prior to pregnancy to ensure that the woman’s health status is the best it can be and to review expectations for the pregnancy and post-partum time as much as possible. This might include timing of monitoring during pregnancy and after, and the need for fetal echo-cardiogram screening for the baby. For many women with CHDs, this pre-pregnancy evaluation will result in a ‘green light’ to proceed. However, for some it will mean further evaluation or procedures prior to pregnancy. Others may decide that the risk and physical toll of carrying a pregnancy to themselves or the baby is higher than they would like to take, even if pregnancy might be possible.
My recent clinic patients are a good example of the multiple paths that can materialize. Jane had a full cardiac evaluation and underwent a heart catheterization procedure that improved her oxygen saturation to the mid-90s. This will lower the complication risk for her and a future baby. She and her husband have consulted with the maternal-fetal medicine specialists and, while carrying a pregnancy with a Fontan circulation can have complications, she is otherwise doing well and they are now planning a pregnancy. Alison underwent full cardiac evaluation and was found to have significant pulmonary valve disease but was tolerating it well. She did well with the pregnancy and is now recovering and raising her baby. Now that she is no longer pregnant, she will undergo further testing to determine if she will need an intervention for her valve. Finally, Barbara completed her cardiac evaluation and also consulted with maternal-fetal medicine. She and her husband decided that the risk to her and the developing baby due to her underlying condition and medications were more than they wanted to take. They decided to start their family using IVF and a surrogate and she underwent successful egg harvest under the close team care of reproductive endocrinology and cardiology.
In summary, the large majority of women born with CHDs will survive to adulthood and many will consider starting families of their own. Most of these women will be able to do so successfully either through pregnancy or other means. As an ACHD cardiologist, this is one of the most moving and personal journeys we take with our patients. For the women with CHDs, staying in care and forming a team of congenital cardiology and high-risk obstetrics is key to understanding the risks and expectations for starting and raising a family and to be able to make informed decisions.
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Dr. Gurvitz is a pediatric and adult congenital cardiologist practicing in the Boston Adult Congenital Heart program at Boston Children’s and Brigham and Women’s hospitals. She did her training on the west coast in the UCLA healthcare system for medical school, residency and fellowship. She also has a Master’s degree in Health Services from the UCLA School of Public Health. She spends most of her time in inpatient and outpatient clinical care of adults with congenital heart disease and doing research regarding public health aspects of congenital heart disease including epidemiology, quality of care, and transition from pediatric to adult care. She has NIH funded grants to study psycho-social and cognitive outcomes in adults with CHD. Dr. Gurvitz also serves as vice-chair of the Congenital Heart Public Health Consortium and immediate past chair of the American Heart Association Adult CHD committee. During her free time, Dr. Gurvitz loves to practice the art of cooking, and training to be a triathlete.