Our patients’ stories: Treating Haven’s pulmonary atresia

by Scott Howe on February 4, 2013


Haven

When Molly Foley was first pregnant, she admits she knew very little about congenital heart defects, or how they could affect her unborn daughter, Haven. But, around 20 weeks into her pregnancy, Molly discovered that heart defects were very real—and very scary—when an ultrasound revealed that Haven had pulmonary atresia. Also known as “blue baby syndrome,” pulmonary atresia is a condition in which the heart’s pulmonary valve is abnormal and doesn’t open.

“It never occurs to most people that their baby could have a heart defect,” Molly says, noting that many parents are all-too aware of other potential birth defects like cleft lip/palate, Down syndrome and spina bifida. “It just doesn’t come across many people’s radar screen.”

And while children born with pulmonary atresia may be rare, there is a wide range of more commonly occurring heart conditions that can affect babies. In fact, when viewed as a whole, heart defects are the number one most common type of birth defect.

Following Haven’s diagnosis, Molly says that the staff at the Boston Children’s Hospital Heart Center “worked very hard to make me psychologically prepared for what was coming next.” Doctors told Molly that Haven needed a series of three surgeries—the first coming when Haven was just four days old. In addition, Haven needed to be placed on an ECMO (Extracorporeal Membrane Oxygenation), a life-supporting technology that replaces a critically ill child’s heart and lungs. “The ECMO was invasive,” Molly remembers. “We weren’t sure what to expect.”

Fortunately, Haven has come through her treatments in great shape. “So far, we are in the ‘lucky of the lucky’ category,” Molly says. “Haven is unbelievable. She is not the child we thought we’d have.”

Haven and Ronan

Haven will undergo her third surgical procedure in April, and her future is looking bright— which is good news considering her job as a big sister keeps her busy. Despite the increased risk of having another child with a congenital heart condition, Molly and her husband Brian are the proud parents to Ronan, a healthy baby boy, born a year and a half after Haven. They are expecting their third child later this year.

Through it all, Molly says that she was grateful for the support she received from her own family, from other heart families and from the staff at the Boston Children’s Hospital’s Advanced Fetal Care Center (AFCC). Although “everybody’s road is so different,” Molly believes that heart families may find it helpful to reach out to other people who are going through a similar experience. “It would be so hard for a family to go through this alone,” she says. In addition to seeking support through the hospital, Molly cites Little Hearts and Linked by Heart as two of the many groups that can help educate and support heart families.

On the occasion of Heart Month, Molly says it’s important to “build awareness of congenital heart defects.” Expectant parents should be educated about the possibility that their baby may have a defect, and they should prepare questions about their baby’s heart before each doctor’s appointment. Molly believes knowing what questions to ask during ultrasound can be extremely helpful to families. (Editor’s note: We will share more information on these questions later in the week.)

In addition to being aware of the more complex defects, Molly thinks that parents could take comfort in knowing that “there are some conditions that correct themselves, and some conditions are easily fixable.” From her experience, she says that education on heart conditions can “take away some of the shock factor” and help heart parents prepare for what may lie ahead.

What lies ahead is never certain, but increased support and innovative treatments give heart families new hope every day. “They’ve made advances even since Haven was born,” Molly says. “Congenital heart defects are super scary, but kids with these conditions are making progress. There’s so much more hope that wasn’t there before.”

“They’ve made advances even since Haven was born… There’s so much more hope that wasn’t there before.”

Molly saw a sure sign of that hope one day while visiting Haven on “8 East,” Boston Children’s Heart Center Inpatient Unit.  As she watched doctors and nurses travel from room to room, busily at work, Molly remarked to a nurse how vibrant the floor seemed. The nurse explained that the inpatient cardiac units get busier every year.

“A decade ago, many of these children wouldn’t be here,” said the nurse. “We’re saving more and more lives now.”

2 comments

  • http://www.CarissaO.com/ CarissaO

    This story feels so familiar. My daughter, now 6, had a correction at 11 months for Tetralogy of Fallot. During Heart Month, and all year long, we express our thanks and appreciation for the care and innovative spirit at Boston Children’s. I’ll be sharing the Foley Family’s story with my social networks in order to do my small part in helping to keep heart health top of mind.

  • http://twitter.com/emilyjelkins Emily Elkins

    I’m a Heart Mom, also!! My 16 year old son was also born with the very rare pulmonary atresia. I’d love to share the following link with Molly.

    http://wreg.com/2013/02/14/sam-elkins-heartwarming-story/

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