Edleigh’s story: A repaired mitral valve, a happy toddler

Eddie, who had heart valve surgery, poses with her stuffed dog Prudence

Edleigh “Eddie” Plaisted is only 15 months old, but already cares for her own ward of patients, including Whalen, Ruffus and Prudence. Her stuffed animals are in good hands — Eddie has spent enough time around doctors and nurses to know how to keep her charges happy.

Eddie’s own medical care began before she was even born, when she was diagnosed prenatally with several congenital heart defects at her local hospital in Minnesota.

“They told us she had an atrioventricular canal defect,” says her mom Alyssa. “But they also warned us we might not know the full extent of her issues until after her birth.”

Eddie was born on June 27, 2017, and had her first open-heart surgery just 10 days later, to repair her narrow aortic arch and place a pulmonary artery band, which would prevent her lungs from getting too much blood flow and allow her to grow until she was ready for a complete repair. Two days later, she underwent another surgery to tighten the band. The surgeons told Alyssa and her husband, Giovani, that Eddie would need another surgery a few months later to actually repair her heart defects and take down the band.

Finding another heart problem

It was during that third surgery in January of 2018 that her doctors discovered Eddie also had a double orifice mitral valve. This is an abnormality seen in some children with atrioventricular canal defect and can make the repair much more complicated. The surgeons repaired what they could and everyone was pleased when, despite significant leakage of her mitral valve, Eddie seemed to be recovering well. Six days after surgery she was scheduled to go home.

Eddie, who had heart valve surgery, examines one of her stuffed animals
Eddie examines one of her patients

“The night before we were supposed to take her home, she just crashed,” says Alyssa. “It was terrible. We spent 30 days in the hospital trying to get her stable.”

When Eddie was finally able to leave the hospital, it was with a peripherally inserted central catheter, or PICC line, a long tube that delivers intravenous medicine. She was on a continuous infusion, which was delivered by a pump to her PICC line, as well as multiple medications given via her G-tube.

“We had to give her 27 medicines a day,” says Alyssa. “And since we had some problems with the PICC line, we were constantly in and out of the hospital. I had to cut back to part time at work and it got to the point where we realized we couldn’t continue to live like that. We needed to fix her mitral valve.”

Valve hope from Boston

When they discussed their concerns with Eddie’s cardiologist, she agreed something needed to be done.

“She told us we needed to go to Boston,” says Alyssa. “We thought, OK, and sent off all of her records right away.” They connected with Dr. Puja Banka, a cardiologist at Boston Children’s, who worked with cardiac surgeon Dr. Sitaram Emani to make a plan for treatment. They set a date for surgery in May and decided Dr. Emani would repair her mitral valve, rather than replacing it, with the hope that the repair would avoid the need for additional valve replacements in the future, as Eddie grew.

Eddie, who had heart valve surgery, examines her real dog
Eddie takes on a larger patient

“We knew a repair was definitely the better option, since it would mean she wouldn’t have to take blood thinners for the rest of her life,” says Alyssa.

Eddie was med flighted to Boston on May 18, 2018. Three days later, Dr. Emani repaired her mitral valve.

“It was all a complete whirlwind. It was the fastest surgery she ever had,” says Alyssa. “When Dr. Emani came out of the operating room, I couldn’t believe he was already done.”

It was also Eddie’s fastest recovery.

“The night after surgery she was fighting to get the intubation tube out, and the next day, she was playing peek-a-boo,” says Alyssa. “She was like a different kid overnight — she had all this energy. Even her doctors were surprised at how well she was doing.”

The gift of a happy baby

Ten days later, they took Eddie home without a PICC line and just a few medications. Her bedroom, which used to most closely resemble a hospital room, is now filled with her stuffed animals and other toys. At 15 months, Eddie is still working on developing her gross motor skills, and needs a G-tube to make sure she gets enough calories, but she’s quickly catching up.

“She’s definitely making up for lost time,” says Alyssa. “She never stops moving and talking. She’s not walking yet, but she can zoom across the floor crawling. She’s my little amazingness.”

Eventually, Eddie might need to have another mitral valve repair, but for now her heart looks good.

“It was a really hard first year, but we’re so grateful for her team in Boston for giving us the gift of a healthy, happy kid,” says Alyssa. “We used to spend our whole day taking care of her medical needs, and now we can concentrate on being parents.”

Learn more about our Congenital Heart Valve Program.