Stories about: congenital diaphragmatic hernia

Our patients’ stories: my child’s congenital diaphragmatic hernia

Jeanne Griffin Vaughn, NP, is a nurse practitioner at Massachusetts General Hospital. When she found out her child would be born with a congenital diaphragmatic hernia, she was thankful for her many connections in medicine, but also felt extra worry because she knew how serious medical conditions could be for children. This is her story.

At just one-day-old Jeanne’s baby needed immediate medical attention.

As an expectant parent, there’s one sentence that no one wants to hear: “There’s something wrong with the baby.” My husband and I heard those dreaded words during our first child’s ultrasound, when the baby was barely at 18 weeks gestation.

When we arrived at the doctor’s office that morning, we decided we weren’t going to ask about the baby’s sex because we wanted to let the anticipation grow over the next few months. As it turns out, not knowing if we were having a boy or girl was the easiest part of the visit.

I first suspected something was wrong when I noticed how long the ultrasound was taking. I thought my professional background would prepare me for any potential medical obstacles we might face during the pregnancy, but as the ultrasound dragged on I knew something wasn’t right. Suddenly my understanding of how many things can complicate a pregnancy was far more of a hindrance than help.

Knowing I worked in medicine, the technician was very direct in telling us that there was something pushing our baby’s heart over the right side of its chest. After a few minutes he called in a doctor to study the ultrasound, who then ordered a series of additional testing. In an instant my first-time mom excitement was gone. Baby pictures were the furthest thing from my mind; all I could think about now was genetics consultations, fetal MRIs, fetal echocardiograms and having an amniocentesis done.

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One mother's story: Pentalogy of Cantrell

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This story was written by Sarah Doyle, mother of Aidan.

I’m sure that I’m one of many parents who credit Children’s Hospital Boston with having saved their child’s life. But I don’t think many parents have had an experience quite like ours. Aidan was born in April of 2007, with a giant omphalocele, a defect in which the abdominal organs develop within the umbilical cord, outside of the abdomen. This only occurs in an estimated 1 in 2,500 pregnancies. The defect was detected during a routine ultrasound at 20 weeks gestation. It’s pretty hard news to take when you are told your unborn child has a life threatening defect, and that the defect may be associated to chromosomal abnormalities or that other anomalies may be present. We thought ourselves lucky; the omphalocele appeared to be isolated, and his chances of survival seemed pretty good.

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