Our patients’ stories: saving “princess” Emily

by Guest Blogger on June 28, 2013

By Paul Schuster

Emily

Our daughter Emily’s heart defect wasn’t discovered until she was nearly 3 years old. In hindsight, we now know that her numerous illnesses and bouts of pneumonia were a sign that something wasn’t right, but until her diagnosis, we never suspected anything serious. She always had plenty of liveliness and certainly kept us busy with her antics—dancing or singing or getting Daddy to play princess with her… again.

By all counts, she was just our happy, energetic little girl.

Then, during a routine doctor’s visit, a nurse said she heard a murmur in Emily’s heartbeat. We didn’t think too much of it at the time, my wife Carol has a heart murmur, so a second murmur in the family didn’t cause too much worry. However, after the echocardiogram that provided clear images of her heart, we began to understand the gravity of our situation: Emily had a hole in her heart.

We learned that Emily was born with a condition known as atrial septal defect (ASD). No parent wishes to hear the news that their daughter has a heart condition, but David Fulton, MD, our pediatric cardiologist at Boston Children’s Hospital, assured us that ASD was treatable, and as heart defects go, a condition that pediatric cardiologists and surgeons see frequently.

In many cases, the hole can be closed through a catheter-delivered device, which is a minimally invasive alternative to closing the hole during surgery. However, the hole in Emily’s heart was about the size of a nickel, too large to be closed with a catheter device, and in such a location that a catheter wouldn’t work well. Given her circumstances, Dr. Fulton recommended open-heart surgery for Emily.

The discovery and diagnosis came quickly for us. I’m not certain we processed the news very well that first week. In fact, our emotions were all over the place. Adding to our emotional situation, within two days of discovering Emily’s condition and hearing the recommendation for surgery, we were back at the hospital to listen to the heartbeat of our new baby growing in Carol’s belly. All these emotional ups and downs made the news that much more difficult to process.

We decided to move forward with the surgery as quickly as possible and were thrilled to have Boston Children’s so close to us. Knowing that a world-class care facility was just a few moments from our home made a very difficult situation a little easier to process.

During follow-up testing, the cardiac team at Boston Children’s identified another possible complication. Due to the location of Emily’s ASD hole, there was a likelihood that her aorta was feeding blood into the wrong chamber of the heart. Dr. Fulton connected us to Christopher Baird, MD, who would eventually perform the surgery, and he helped determine the course of action.

Christopher Baird, MD

We celebrated Emily’s birthday on September 1 and three weeks later, she had her open-heart surgery.  Despite our obvious concerns, everything about the process at Boston Children’s was amazing. The care that the Nurse Practitioner Jenna Murray, RN, MSN, provided us in pre-op to walk us through the process was outstanding. We met with everyone who was going to be with our little girl throughout the surgery. While it was difficult as very anxious parents to pace the waiting room when the surgical team does their work, when the news does come, and it is positive, it means more than anything you can imagine.

We spent the day under the care of the ICU nurses, who took extraordinary care of Emily (and us!). And then a transfer to the inpatient cardiac floor where Lindsey, Sarah, Lauren, Jillian and Jenna as well as our Nurse Practitioner Michelle, helped Emily recover strong from the surgery. Within just a few days she was back–full of energy and wanting to play princess all over again.

Emily and Jack together

Since the surgery, we’ve been back to Boston Children’s to do fetal monitoring of our new baby’s heart.  There is some probability that if a child is born with ASD, a similar defect may appear in her siblings. As it turns out, little Jack was born this winter, with a minor ventricular septal defect. However, unlike his big sister, testing thus far suggests that Jack’s condition may close on its own. Regardless of what happens, we’re very pleased to have Boston Children’s on our side and looking out for our whole family.

Many thanks to the wonderful staff and experts at Boston Children’s—you all have a special place in our (mended) hearts!

1 comment

  • Jill Madden

    My daughter is going in to Children’s July 10th for ASD repair. As you can imagine my husband, family and I are terrified. I found this article very helpful. I would love to speak to the parents more about their daughter’s ASD closure as everything that was written in this article was identical to my daughter’s condition. I am SO happy to hear your daughter is doing well and back to her normal self. As much as we have seen and heard about Children’s Hospital, they are THE BEST! Many prayers are sent for your son Jack. So happy to hear Emily is doing so great!! Thank you Children’s for everything your hospital has done for our children.

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