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Katy’s story: Personalized care for ventricular septal defect touches family’s hearts

08/17/2017

As an urgent care nurse at Lowell General Hospital and a substitute school nurse, Lisa was accustomed to listening to her patients’ heart sounds through a stethoscope while at work. So, she didn’t panic when her daughter Kathryn’s pediatrician detected what sounded like a heart murmur—a whooshing noise between heart beats that can be benign or a sign of something more serious—one day after the newborn’s birth.

Meeting Dr. de MoorThe care team at Floating Hospital for Children in Boston, MA helped care for Katy who underwent open-heart surgery to treat ventricular septal defect (VSD).

The little red-headed girl, known as Katy, was referred to pediatric cardiologist Michael de Moor, MD whose practice at Floating Hospital for Children’s Pediatric Specialty Center in Chelmsford was down the hall from the family’s pediatrician. Dr. de Moor, chief of Pediatric Cardiology at Floating Hospital at Tufts Medical Center, did his own stethoscope listening and ordered an electrocardiogram (EKG) to evaluate the heart’s electrical system as well as an echocardiogram (echo) to assess the heart’s structure and measure blood flow.

Lisa and her husband, Billy, a Lowell police officer, felt their anxiety level rise with each test. “Dr. de Moor had the awesome responsibility of telling us that Katy had a hole in her heart,” recalls Lisa, her voice tight with emotion. “He was so calm and reassuring. He spoke slowly—it helped that he has a lovely accent—and drew us a detailed diagram so we could fully understand.”

VSD diagnosis: Watch and wait

Katy was diagnosed with ventricular septal defect (VSD), a common heart defect that is present at birth (congenital). According to Dr. de Moor, “VSD is a hole between the two pumping chambers of the heart, the left ventricle and the right ventricle. Every time the heart beats, oxygenated blood travels across the hole from the left ventricle to the right and over to the lungs instead of out to the body. This causes the heart and lungs to work harder, making breathing more difficult. A child can develop lung infections and may have issues feeding and growing normally.” 

Dr. de Moor explained that he would adopt a watch and wait approach with Katy, as some VSDs close on their own. He prescribed diuretic medication to decrease the fluid in Katy’s lungs and followed her closely at monthly checkups. At home, Lisa and Billy were alert for any indications that their daughter was in respiratory distress. Fortunately, other than one bout with respiratory syncytial virus (RSV), Katy was a happy, heathy child – gaining weight and meeting developmental milestones.

The care team at Floating Hospital for Children in Boston, MA helped care for Katy who underwent open-heart surgery to treat ventricular septal defect (VSD).Surgery, the next step

When follow-up echocardiograms continued to show no change in the VSD, Katy’s parents prepared for the next step. “Dr. de Moor told us early on that open-heart surgery was a probability if the VSD didn’t resolve. It made sense to fix the hole now, while Katy was young and before it became a serious issue,” said Lisa.

After getting a second opinion, Katy’s parents felt confident that she should remain in Dr. de Moor’s care. He referred them to Dennis Mello, MD, director of Pediatric Cardiac Surgery, and Deborah Bunk, PA-C, physician assistant, in Cardiothoracic Surgery at Floating Hospital. “Dr. Mello and Deb explained what was going to happen before, during and after surgery. Dr. Mello’s surgical experience and his recommendation by Dr. de Moor solidified our decision to go ahead,” said Lisa.

Deborah served as the family’s personal liaison throughout the surgical process: fielding questions at pre-operative appointments, directing an unhurried tour of Floating’s Pediatric Intensive Care Unit (PICU) and keeping the family informed while Katy was in the operating room (OR) and afterward in the PICU. “Deb never made us feel rushed or worried. She is the level-headed, firm and kind person you want in charge of your child’s care. We felt she truly cared about Katy and our family,” Lisa said.

Play eases transition to surgeryThe care team at Floating Hospital for Children in Boston, MA helped care for Katy who underwent open-heart surgery to treat ventricular septal defect (VSD).

The family was also struck by their interaction with Megan, a Wheelock College graduate student in Child Life Services who got to know them through play activities while they waited for surgery. “When it came time to say goodbye, I was able to let go because I was putting Katy in the arms of someone I knew,” said Lisa. Megan’s supervisor Sarah Coyne, MS, CCLS said child life specialists use play and conversation to decrease anxiety and make the prospect of surgery easier. “Children may hold an IV straw or play peek a boo with an anesthesia mask. When medical equipment is viewed as a toy or object, it’s less scary,” said Sarah.

From the OR to the PICU

Katy underwent open heart surgery one month before her first birthday. To perform the repair, Dr. Mello placed Katy on a heart lung machine and stopped her heart.  “This is often the most frightening part for parents – knowing that their child’s heart will be stopped,” said Deborah. Dr. Mello and his surgical team closed the hole in Katy’s heart by sewing a piece of the sac around Katy’s heart called the pericardium over the VSD.

“Having a skilled surgeon and being attentive to detail during the post-operative period are key,” said Deborah, noting that the first 24 to 48 hours following surgery are critical. Katy arrived in the PICU with numerous tubes, IV lines and medication pumps necessary for her recovery, but often overwhelming for parents to see attached to their small child. “Luckily, my husband and I had been prepared for what we would see and what to expect,” said Lisa. A team of doctors, along with Deborah and PICU nurses, monitored Katy constantly, looking for signs of poor cardiac output and readying her for discharge.

The care team at Floating Hospital for Children in Boston, MA helped care for Katy who underwent open-heart surgery to treat ventricular septal defect (VSD).Home is where the heart is

Katy’s five-day hospitalization went smoothly and she was discharged to Dr. de Moor’s care. He said his young patient and her healthy heart are as “good as gold.” He’ll continue to see her for periodic checkups but anticipates a limitless future.

Katy returned home to her parents and her older brother with a favorite blanket in tow—and a normal heartbeat. “It was the best sound I’ve ever heard,” Lisa said.