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Sophia's story

On Easter Sunday 2012, Richard and Andrea Lies of State College were celebrating the holiday with family and their newborn twins Olivia and Sophia at the Neonatal Intensive Care Unit at Geisinger Janet Weis Children’s Hospital in Danville.Sophia Lies

Olivia and Sophia were born prematurely at 31 weeks and weighed three pounds, 14 ounces and two pounds, 13 ounces, respectively.  It had been a long few months for Andrea, who was put on bed rest two months prior to the girls’ arrival. Now has the girls were moving to the progressive section of the NICU, Andrea welcomed the thought of taking another step to getting them home.

While removing breathing assistance equipment and examining the twins, Lauren Johnson, MD, neonatologist, noticed Sophia had a heart murmur. She asked Robert Mangano, MD, director of pediatric cardiology, to evaluate her.

“Sophia wasn’t diagnosed immediately because she didn’t demonstrate any signs that she had a heart defect,” Dr. Mangano said. “When we examined her, she did have a heart murmur that was abnormal and suggested a defect was present. We then performed an echocardiogram which showed she had a large ventricular septal defect. The left side of her heart also was a little underdeveloped.”

Because of her small size, it would have been difficult to do anything surgical right away. So she was moved back to the intensive side of the NICU and treated with medications to manage the symptoms associated with the heart defect.

“Fairly soon after we diagnosed her she developed congestive heart failure,” Dr. Mangano explained.  “The hole in the heart allowed too much blood to pass from the left side to the right side and too much blood went into her lungs. It caused her to breathe hard and fast and it was difficult for her to grow.”

Medication became ineffective for control of the congestive heart failure. After repeated testing and quite a bit of discussion, the heart team soon decided that they needed to do something more definitive to treat the condition and allow Sophia to grow. Dr. Mangano, the congenital heart surgeon, Anastasios Polimenakos, DO, and the rest of the team decided on a pulmonary artery banding.

Pulmonary banding is a procedure in which a surgeon ties a band of material around the pulmonary artery, which is the artery that carries blood from the heart to the lungs. The band restricts the artery and doesn’t let as much blood through.

“A pulmonary artery banding was attractive for Sophia because she was so small and open-heart surgery would be dangerous to attempt,” Dr. Mangano explained.

Anastasios Polimenakos, DO, director of Pediatric Cardiothoracic and Congenital Heart Surgery, performed the banding procedure.

“Sophia did very well with the surgery. Everybody was a little nervous because of how small she was,” Dr. Mangano said. “Pulmonary banding is a bit of an art for the surgeon to perform just right. A little too loose and it won’t do any good and little too tight she would be too blue. Dr. Polimenakos got it just right. It controlled the heart failure and she was able to leave the NICU not too long after.”

Sophia had a six-week stay in the NICU, while Olivia was in the NICU for four weeks. Andrea can’t say enough about how she and her family were made to feel at home during their stay.

“We were able to stay at the Ronald McDonald House for a little while and then at the Pine Barn Inn,” Andrea said. “We actually signed forms so Olivia could be in the NICU with us. As a new mom, it was hard to choose between the two daughters, and I wanted to be with both of them all the time.

“The NICU staff was very kind and generous,” she said. “We got to know all the nurses and they made us feel at home any time we walked in. The NICU is a pretty scary place and anything can happen. They always took time to answer questions and let us know what they were doing.”

Sophia was monitored over the next eight to nine and was examined continuously by doctors at Geisinger Gray’s Woods in State College.

“We took her to the cardiologist every two weeks for an echocardiogram,” Andrea said. “Most times she saw Fareed Ahmad, MD, cardiologist, at Gray’s Woods.”

It became clear that the left side of her heart was not growing very well and if this persisted, she may not be a good candidate for future corrective surgery. After more testing and many heart team meetings, it was decided to perform a catheterization procedure they thought would encourage the left side of Sophia’s heart to grow. Using the Children’s Miracle Network at Geisinger funded pediatric heart catheterization laboratory, Dr. Mangano was able to place a device that plugged the hole in the upper two chambers of Sophia’s heart.

Dr. Mangano hoped that this would force more blood to flow into the left side of her heart and cause it to grow. Sophia did very well with the procedure.

“We again took her for echocardiograms every two weeks,” Richard said. “After a month her heart started growing.”

 The Lies were spared lengthy trips to Danville every two weeks during this time thanks to special echocardiogram equipment purchased with Children’s Miracle Network funds for cardiac outreach clinics at facilities like Geisinger Gray’s Woods.

Finally, following several tests and scans, doctors determined that Sophia’s heart had grown enough for her final procedure. At the end of January of this year, Dr. Polimenakos performed open-heart surgery.

The Lies knew that the surgery would be very tough on them. Sophia was in for a six-hour long surgery and it would be several hours before they could see their little girl after surgery.

The Lies met with doctors the day before and Dr. Polimenakos answered all their questions about the procedure and the recovery period.

“Our family was there for support,” Richard said. “We hung out in the cafeteria and the doctors called us every hour to update us on what was going on in the operating room. That was very comforting. We actually couldn’t see her for 10 hours. It was a very long 10 hours.”

“We decided as a team that Sophia would need to undergo a complete repair and closure of the hole inside her heart,” Dr. Polimenakos said. “At the same time we removed the device from the upper chambers and took care of that hole as well.”

Sophia recovered well, spending just eight days in the Children’s Hospital before being discharged for home.

“We couldn’t lift her under her arms for 8 weeks, and she couldn’t sleep on her stomach, which was difficult because she is a stomach sleeper,” Andrea said. “She is doing awesome. She is active and daring. She is talking, crawling and walking right now.”

The Lies were very thankful for the care Sophia received at Janet Weis Children’s Hospital and the pediatric cardiac outreach clinic at Gray’s Woods.

“We are very grateful for everything the doctors have done,” Andrea said. “They were phenomenal with her and us. The patience and the decisions they made for her … they focused on her and we are very grateful.”

“I thought it was fascinating that we were able to take care of such a tiny baby,” Dr. Mangano said. “She was really one of the smallest babies that needed an operation like this. It’s a bit of a miracle that the left side of the heart grew as well as it did after the catheterization procedure. Without that her outcome would not have been as good. She would have survived and done OK, but not as well as she is going to do now. She will be able to have a very normal life.”

The Lies said they could also see the impact Children Miracle Network had on the treatment of their daughter.

“The incubators and dozens of others items said ‘Provided by Children’s Miracle Network’ right on them,” Andrea said.

Dr. Mangano also stressed the importance of Children’s Miracle Network funds for the pediatric cardiology team.

“Children’s Miracle Network helped to purchase the heart catheterization laboratory that we used for two of Sophia’s procedures,” he said. “That equipment was indispensable when it came to caring for her.”