Children's Fetal Cardiology Program featured on NPR's Morning Edition

This morning, NPR ran a piece on Children’s Hospital Boston’s Fetal Cardiology Program that focused on its success in performing in-utero heart surgery. It’s a very complex program that brings together doctors, surgeons and nurses to try to repair blood vessels the size of a pen point in a fetal heart no bigger than a grape; all while the child is still in the mother’s womb.

In the following video, Wayne Tworetzky, MD, of Children Hospital Boston’s Cardiovascular Program discusses how difficult these procedures can be, not just because of the small size of fetal hearts, but also because of complications that can arise from performing invasive surgery on a fetus when the mother carrying the baby is perfectly healthy.

Hypoplastic left heart syndrome (HLHS) isn’t the only heart condition treated here at Children’s; in fact, our specialists treat a wide variety of patients for many cardiovascular anomalies. Here are just a few of their stories:

• Cheryl Toole had been a nurse at Children’s Neonatal Intensive Care Unit (NICU) for over a decade when her day-old daughter had to undergo heart surgery. Here, she shares her experience as patient’s mother instead of care provider.

• Meet Ann Louise an 18-month old charmer who received heart surgery from Children’s doctors before she was even born.

• Sarah, the mother of baby Aiden, discuses what it was like to have child born with Pentalogy of Cantrell, a rare heart condition with a very low survival rate, and how the doctors at Children’s helped Aiden beat the odds.

When Casey Bolton learned her unborn baby had (HLHS) she had never even heard of the condition, never mind understand its complicated treatment. Now, inspired by the care she and her baby received at Children’s, the young mom works tirelessly to raise awareness on HLHS and its treatment so other mother’s won’t have to go through the fear and confusion she did.

Do you or a family member have a story that you’d like to tell? Please write your experiences in the comments and we’ll do our best to help you share your story with the world.

  • Kaciray2007

    My son was also born with Pentalogy of Cantrell. I didn’t know anything was wrong with him until the day he was born. My water broke a little over 5 weeks early. The doctors done an ultrasound to see if the cord was around his neck or if he was in distress, that’s when they seen the omphalocell. I was rushed to another hospital for an emergency c-section. When he was born he was blue. They immediately put him on the ventilator and rushed him to the Children’s Hospital in New Orleans. Where they discovered he also had Tetrology of Fallot, a diaphragmatic hernia, a sternal defect, and his heart was tilted. He was 4 days old when the doctors told us he would never see a month old, much less his first birthday. He stayed in the NICU for 7 months before he got to come home. I had to learn how to put down his nG tube (that was the only way he would eat). Just over a year old he went theough heart surgery to repair the VSD and pulmonary stenosis. Around his second birthday he had abdominal surgery to repair the omphalocell and diaphragmatic hernia. Dec 2010 we were informed that the right ventricle was enlarging gradually due to back flow from the pulmonary valve and he would have to have another surgery, just didn’t know when. November 2011 he went in to have an echo and his cardiologist said he would need surgery within a year to repair it. As I’m typing this message I’m waiting to hear from the Surgeons to find out how soon we will have surgery. It could be within this coming month.
    Kaci will turn 5 in February 2011. He is living a normal life, he not on any medications for his heart or anything, and he also is in Pre-K. The past five years have been a roller coast ride but he is doing great. He is aware of what he has and he is not ashamed of his scares, he is actually pround of them. Kaci has came along way from the child they didn’t expect to live. As we wait for surgery to replace the valve we are planning his 5th birthday.
    Kaci is also a big brother to a 2 year old brother, Kaden.
    Theresa 27 Louisiana