Nashua mother fights for daughter’s health

When the rest of the Wildcats girls’ soccer team decided to hang up their cleats, Erin Kelley was still kicking.

It was 6 p.m. on a late October evening – dusk was approaching, and the air was moving from comfortable to cold. The other girls strolled across the grass in their knee socks and gym shorts, loading equipment into a red wagon.

Erin broke away from the group and jogged off the field to grab a sweatshirt, her bright blonde ponytail swinging behind. After an hour and a half of practice and drills, she was still following a soccer ball.

A year ago, she wouldn’t have been.

In February, Erin underwent a relatively new procedure known as minimally invasive heart surgery to repair a hole between the two lower chambers of her heart. As a result of the procedure, the 11-year-old Nashua girl’s lifelong struggle with shortness of breath and fatigue began to improve in a matter of weeks.

However, as triumphant as her improvements have been for her mother, Nancy Kelley, the decade-long struggle to find a solution to her daughter’s health problems is one she won’t soon forget – one that taught her how important it is for parents to trust their instincts when it comes to their children’s health.

Erin was born with congenital heart disease and had four defects in her heart. The major defect – the hole between the two lower chambers of her heart – caused some of the blood being pumped into her lungs to spill out into her body.

A tough beginning

From birth, Erin was constantly under the care of cardiologists affiliated with Children’s Hospital in Boston. She was hospitalized several times in her first year of life for a respiratory virus, pneumonia and congestive heart failure.

However, by the time Erin was 1 year old, she had gained strength and was spending less time in the hospital. Multiple doctors recommended waiting until she was 5 or 6 to make a decision on whether or not to repair the hole in her heart. Nancy wanted the defect repaired while Erin was young, but trusted that the doctors were making the right decision by being cautious.

By the time Erin was 4, tests revealed that her heart was abnormally large, but doctors still thought operating was a premature decision. They said Erin’s heart was abnormal, Nancy said, but wanted to wait before operating to see if her condition became worse.

Erin’s heart had a murmur that was so loud, it could be heard without a stethoscope, her mother said. Nancy could feel the murmur, which she said sounded like a cat purring, when she held Erin as a baby. When she got older, Erin could feel it, too. Nancy wondered how abnormal her daughter’s heart would have to be before doctors would perform surgery.

Heart murmurs are not always dangerous, however, according to Dr. Robert Geggel, a cardiologist at Children’s Hospital. They are sometimes merely indicators of a mild condition, he said.

Still, Nancy thought her observations about Erin and what the doctors were telling her were not in synch. The doctors said Erin was fine; Nancy noticed she had difficulty swallowing and was often short of breath. She was smaller than other kids her age and had trouble keeping up with them. Nancy suspected her daughter’s heart was weakening.

“As she got older and wanted to do more stuff, her body couldn’t do more stuff,” Nancy said.

Nancy said she and her husband, Paul, insisted doctors do a catheterization to take a closer look at Erin’s heart defects. During the procedure, doctors discovered a problem that had previously been undetectable – a vascular ring around Erin’s esophagus and trachea that explained why she had difficulty breathing and swallowing.

Doctors said Erin would probably need to have surgery to repair the vascular ring eventually, Nancy said, but again, told the Kelleys not to worry about the problem until she was older.

Nancy found herself doubting the doctors once again. Her instincts said her daughter’s health was deteriorating and she couldn’t understand why they were delaying the procedure. Nancy said doctors told her she was being paranoid and was making Erin sicker by constantly worrying about her health.

“It was like I needed a tranquilizer to go to the appointments. They were like, ‘She’s fine, she’s normal,’ ” Nancy said. “I didn’t believe that.”

Nancy began researching Erin’s heart condition. She bought books, surfed the Internet and practically became an expert on the heart, she said. The more she learned, the more certain she became that Erin should have surgery.

However, by that point, members of Nancy’s family were beginning to agree with the doctors. They thought she was obsessed and urged her to drop the issue. They were saying, “Where is this all going to end?” and “Why would you want to put your kid through this if you don’t have to?” Nancy said. “I was getting a lot of pressure to stop.”

When Erin’s was 8, doctors decided to repair the ring around her trachea and esophagus in a closed heart procedure. Nancy wanted doctors to repair the hole at the same time, but they told her repairing that defect (a more complicated surgery) was still a premature decision.

Doctors told Nancy that Erin’s health would improve after surgery, but Nancy said it didn’t. As the coach of her daughter’s soccer team, she noticed Erin still had difficulty breathing. Even Erin’s teachers agreed that she wasn’t as active as other children. In fact, Nancy said she noticed Erin becoming quieter and less active with every passing year.

Turning point

Last December, the Kelleys began researching more aggressive approaches to pediatric cardiology. They sent Erin’s latest test results to three separate cardiologists, none of whom knew other doctors were reviewing the case.

When the opinions came back, Nancy said her suspicions were confirmed. After five years of postponing a surgery she was sure her daughter should have, all three doctors told her it should have been performed years ago.

“Why the (expletive) hasn’t this been repaired yet?” one surgeon replied, according to Nancy.

After reviewing Erin’s medical history, Geggel said it appeared Erin’s care at Children’s Hospital was appropriate for her condition. Doctors were being cautious, he said, because people with a small hole in the heart can live a perfectly normal life.

“They (doctors) were being cautious and careful, and if the mother wanted to go elsewhere, that is certainly her prerogative,” Geggel said.

In January, the Kelleys traveled to New York University’s School of Medicine to meet Dr. Stephen Colvin, the chief of the Division of Cardiothoracic Surgery. Colvin told the Kelleys about a procedure called minimally invasive heart surgery that could be used to repair Erin’s defect.

During normal heart surgery, a 10-inch incision is made down the center of the chest and the breastbone is divided. With minimally invasive surgery, surgeons access the heart through small incisions through the ribs. They use longer instruments and viewing scopes, eliminating the need to cut through the breastbone.

With minimally invasive surgery, there is less scarring, patients recover from surgery more quickly and they experience less pain.

On Feb. 6, Erin went into surgery to repair her major heart defect. Her body temperature was lowered to 72 degrees and she had no heartbeat or respiration for 61 minutes during the 5½-hour surgery.

During the surgery, Colvin noticed another defect – one that had previously been undetectable. The defect was a ventricular muscle bundle, which is sometimes formed when repair of another defect is delayed.

Colvin, who could not be reached for this story, told Nancy that if he had not performed the surgery and the muscle bundle had not been removed, Erin probably would not have lived much longer.

“I was told by Dr. Colvin on that first post-op conversation that she was on the verge of heart failure and in the next six months would be either dead, in cardiac failure or a cardiac cripple,” Nancy said. “She would have been in very, very serious condition, if not dead.”

Quick recovery

After the surgery, Erin spent four days in the hospital. Ten days after the procedure, she was back in school, and six weeks later she went skiing. She has a small scar on the side of her ribs that will be barely visible when she reaches adulthood.

Today, Erin can do all of the things she wants to do without worrying about her health. She plays soccer and lacrosse without getting easily winded. And most importantly, Nancy said, she feels she can do everything her friends can do.

“She’s different mentally,” Nancy said. “She doesn’t think of herself as different anymore.”

Erin rarely talks about the surgery now, but Nancy still thinks about it. She can’t help but wonder what could have happened if she had listened to the doctors and family members who told her Erin did not need surgery for so many years. Nancy now wants other parents to know how important it is to advocate for their children’s health.

“If you’re looking at your child and you’re feeling like something is not quite right, don’t give up,” Nancy said. “People even in my own family were telling me, ‘Give up,’ and something in the back of my mind said, ‘I can’t do that.’ ”

Nancy said if she could say one thing to parents whose child has a serious health problem, it would be to fight for their child until they feel comfortable with the care he or she is receiving.

“Find out as much as you can about whatever is wrong with your child and don’t just listen to what the doctor tells you,” Nancy said. “Never give up. Go with your gut.”