FAQ

Fetal Cardiac Intervention is a procedure that is performed in utero and is reserved for the following three life-threatening Congenital Heart Defects:

1. Aortic Stenosis with evolving Hypoplastic Left Heart Syndrome (HLHS): The goal of in utero aortic valvuloplasty is to dilate the narrowed aortic valve and improve left heart growth and function to prevent progression to HLHS
2. HLHS with restrictive or intact atrial septum: The goal of the FCI is to create an atrial septal defect and sometimes place a stent in utero to decompress the left atrium and allow the baby to be more stable after birth. There is also potential to improve lung and vascular function before birth, which might improve surgical survival.
3. Pulmonary atresia with intact ventricular septum with evolving HRHS- The goal of in utero pulmonic valvuloplasty is to dilate the narrowed pulmonary valve and improve right heart growth and function to prevent progression to HRHS

Hypoplastic Left Heart Syndrome and Hypoplastic Right Heart Syndrome are complex Congenital Heart Defects (CHD) in which there is only one functioning ventricle. They are called single ventricle heart defects and their cause is unknown. It is one of the most challenging of Congenital Heart Defects to treat and occur in approximately 8% of all children born with Congenital Heart Defects.

The outcomes vary. Some of the children are born with a two ventricle circulation at birth and do not require any cardiac surgery. Others have a “borderline” ventricle and need cardiac surgery, however this borderline ventricle can contribute to their overall cardiac output. Lastly, some of the children despite the Fetal Cardiac Intervention, are required to undergo the traditional single ventricle surgeries.

Every child is different and responds differently to this procedure. Click here to read the most recently published data about Fetal Cardiac Intervention Outcomes.

In 2001 a team of Specialists from Children’s Hospital and Brigham and Woman’s Hospital initiated Fetal Cardiac Intervention as a treatment for evolving HLHS/HRHS. This team is the first to successfully perform a Fetal Cardiac Intervention with successful and measurable results. To date they have performed close to 150 interventions and have the most experience in the area of Fetal Cardiac Intervention.

The Ellianna Grace Foundation also provides grants to families facing Ebstein’s Anomaly who travel to Children’s Hospital Boston and Brigham and Woman’s Hospital for in utero care and the birth of their baby.

The Ellianna Grace Foundation provides grants to families traveling for Fetal Cardiac Intervention and follow-up care, including the birth of their child and subsequent surgeries. Grants help pay for airline tickets, food, lodging and transportation for the parents and patient. Ellianna Grace Foundation is committed to helping families return to Boston for care not only while their child is an infant, but also through the school age years.

The first step is to contact Ellianna Grace Foundation tell us a little bit about your family by filling out a Resource Assessment Form and email it to us at info@elliannagrace.org. After we review the form, we will contact you. After we gather all our information and we make a decision regarding your grant request.

Once a family has been awarded a grant, they may apply again in the future for a subsequent visit to Boston. Grant amounts awarded will vary based on fundraising dollars EGF is able to secure each year. We cannot guarantee any specific grant amount.

Here is a link that can familiarize you with the lodging options in Boston:
http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P34.html

Many of our families stay at the Yawkey Family Inn, which falls under Patient Family Housing
http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P34sublevel78.html

Many families choose to return to Boston for their baby’s birth. This is a decision that you need to make with the advice of your doctors and based on your family situation. The team in Boston can advise you of your options. Ellianna Grace Foundation provides aid to help families return to Boston for the birth of their baby.

Many families that choose Fetal Cardiac Intervention do not live close to Boston. Children have a local cardiologist who sees them on a regular basis. Ideally, the local cardiologist and cardiologist in Boston will communicate and make decisions together about next steps for your child. We are happy to share our experiences managing our children’s care at a distance from Boston.

Ellianna Grace Foundation has a program called Parent-to-Parent which helps families meet each other and share experiences. Please contact us and we can put you in touch with other families.

Please join our Facebook Page! This is a great way to connect with families and learn about their journeys. Visit our discussion tab on Facebook to ask questions or join in discussions with other families.

Please email us at info@elliannagrace.org OR call 952.445.6228. Contact the Advanced Fetal Care Center at Children’s Hospital Boston for more information on Fetal Cardiac Intervention at 1.866.338.2522.