Terra Lafranchi, NP, Fetal Cardiology Program Coordinator 

Shocked. Scared. Uncertain. Anxious.

These are just some of the emotions parents may feel upon learning their unborn child has a cardiac abnormality. At Boston Children’s Hospital, a dedicated team including cardiologists, and nurses, offers comprehensive counseling and care services for expectant parents and fetuses with congenital heart disease.

The Advanced Fetal Care Center and the Fetal Cardiology Program welcome anyone who has a confirmed or suspected prenatal cardiac diagnosis. Some patients self-refer, while many others are referred by cardiologists or obstetricians. Patients from all over the globe reach out for second opinions, and after consultation, many decide to travel here for delivery and neonatal surgery.

“Our team responds to all referrals and inquiries promptly, and we bring expectant mothers into clinic for a full evaluation as quickly as possible,” says Terra Lafranchi, NP, Fetal Cardiology Coordinator. “The sooner a patient is seen, the more time the family has to become educated about the diagnosis and make informed care decisions.”

In addition to fetal echo and cardiology consults, other services such as ultrasounds, MRIs, and/or consults with other pediatric specialists are available as needed. All patients are also offered a social work consult and a tour of our Cardiac ICU. Lafranchi’s role includes prenatal counseling and education, cardiac triage and delivery planning, and serving as the liaison between multi-disciplinary care team members within and outside of Boston Children’s.

Personalized Care

One of Lafranchi’s passions is helping families prepare for the road ahead as much as possible. Recognizing that parents are not likely in the right frame of mind to fully grasp a lot of information at their initial visit, Lafranchi takes notes for them to bring home and review later.  She has also created standardized reference materials.  Her first project was a guide about preparing for your baby’s heart surgery, and more recently, Lafranchi published An Expectant Parent’s Guide to Hypoplastic Left Heart Syndrome and Other Single Ventricle Defects. This in-depth handbook walks parents through each step of their journey- from initial diagnosis and first surgery, to post-surgical feeding and development issues, to the child’s long term outlook.

Lafranchi follows the patients of Fetal Cardiology Program Director Wayne Tworetzky, MD throughout their childhoods, and says this longitudinal care experience enhances her clinical practice.

“I talk with the families about short-term plans and long-term expectations—all of the potential hurdles and stressors they may encounter,” Lafranchi says. “It is an ongoing conversation. But it’s incredibly rewarding to have the opportunity to help these families at the beginning of their journey and to help them prepare for each step ahead.”

Newborn Surgery and Beyond

If a family chooses to come to Boston Children’s for surgery, “our center takes charge of coordinating prenatal care, arranging high-risk obstetric care and communicating with the delivery team about the expected cardiac triage plan,” explains Lafranchi. The team also helps prepare out-of-region families to arrive in Boston at around 36 week’s gestation and gives them a realistic expectation of how long they may need to stay in Boston after delivery. “Our goal is to try to help families prepare prenatally for the road ahead,” says Lafranchi. “Therefore, we advise them to begin thinking about care for their other children now, provide a realistic timeframe that they will be away from work,  and provide resources for temporary accommodations.”

Lafranchi notes that feeding can be challenging for infants post cardiac surgery, so she educates parents about this potential family stressor and the strategies available to promote optimal growth and nutrition.  The amount of cardiac babies that successfully breastfeed continues to increase and the CICU now allows many babies that are stable to breastfeed before surgery.  “This has multiple benefits,” Lafranchi explains. “First, the infant has the chance to learn how to feed before undergoing surgery. Second, it can improve milk production in the mother. And finally, it promotes bonding and allows mothers to feel more involved and more secure in their mothering role.” To help support mothers interested in breastfeeding or pumping breast milk, prenatal lactation consults are provided.

Beyond cardiac surgery, there may be other potential challenges. Quality of life and long-term cardiac care concerns are discussed. The Heart Center is proactive about neurodevelopmental concerns, and all neonates are enrolled in the Cardiac Neurodevelopmental Program and Early Intervention Services at home following surgery.

“I am very realistic about the challenges on the road ahead, but I am also supportive and sympathetic to what these families are going through emotionally, knowing that they suddenly have to adjust to the loss of the idealized pregnancy and child.  In my role, a good day is when the  prognosis is favorable and I am able to help parents understand that although their baby will need heart surgery, there is a very good chance that their child will grow up to laugh, play, get into trouble or go to medical school—just like many other children.  But when there is a devastating diagnosis, it is also rewarding when I am able to help parents ask the questions they are afraid to ask, provide as much education as tolerated, and support a family that may have just experienced the worst day of their lives.”

Fetal Cardiac Intervention

“To be a candidate for a fetal cardiac intervention, a patient has to fit a number of requirements,” says Lafranchi. “The most common diagnosis we see for this is aortic stenosis with evolving hypoplastic left heart syndrome (HLHS). But fetal intervention patients represent a very small portion of the cases at the Advanced Fetal Care Center.  To maximize care choices, it is critically important that referring providers send us images early on, when there is any suspicion of an abnormality

The first successful fetal cardiac intervention was performed by a team of expert clinicians from Boston Children’s and Brigham and Women’s Hospital performed the first successful fetal cardiac intervention. To date, our team has performed more than 180 fetal cardiac interventions – more than the combined total of every other hospital in the world.

As new diagnostics and intervention techniques continue to advance the field of fetal cardiology, Boston Children’s will continue to provide the highest standard of care-  from comprehensive counseling and support services to the latest clinical innovations.

Copies of Lafranchi’s book are available to order free of charge. If you are interested, please call 617-355-6512 or e-mail terra.lafranchi@cardio.chboston.org