Cardiovascular Program - Children's Hospital Boston

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Boston, MA 02115
(617) 355-6000

Clinical Services (Cardiovascular Program):

Kayla's Story: Ventricular Septal Defect

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Kayla with Dr. Mark Alexander

Our first experience with Children's Hospital Boston was with the Cardiology Department. Kayla had a heart murmur at her four-week checkup that bothered her pediatrician. We were referred to Children's and met Mark Alexander, MD.

We found out she had a Ventricular Septal Defect, and hoped it would close on its own. But at 4 months of age and after two admissions to the hospital, with congestive heart failure and RSV, Kayla had surgery to close the hole.

No idea what to expect

As first time parents, we were terrified. We had no idea what to expect with a sick child, and it was very overwhelming. The Cardiology Department was fantastic and worked with us to teach us how to care for Kayla before, during and after the surgery. Prior to the surgery, Dr. Alexander explained the care Kayla needed at home with medications and with nutrition. He saw her almost weekly leading up to the decision to have surgery.

Preparing for heart surgery

Dr. John Mayer performed the heart surgery. He was very caring and compassionate. The night before the surgery, he sat with us and explained what was going to happen and what we should expect. Several of the cardiac nurses prepared us for the cardiac ICU after surgery. They took us on a tour of the ICU prior to the surgery, and explained all the tubes and wires we would be seeing on Kayla while she was in the ICU. We also got to speak with another family whose child had a VSD repair. It was very comforting to us.

Going home after surgery

After surgery Kayla was home in four days, and again Dr. Alexander prepared us for Kayla's home care. This was just the start to unraveling the mystery of what was wrong with Kayla. Three years later, she was diagnosed with Mitochondrial Encephalomyopathy.

Doing well

Now, nine-and-a-half years later, Kayla is doing fantastic. She has no cardiac issues, and is doing more today than anyone ever thought she would.

We were very grateful that first experience at Children's with the Cardiology team was a wonderful experience. They prepared us for our many visits and procedures at Children's. The compassion and skill shown to us by each caregiver made a very difficult situation much easier to handle. We are very grateful for Children's Hospital Boston.



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