2016 Miracle Kid Angel Gillott

Anyone who knows Angel Gillott of Lock Haven would say she is a typical teenaged girl. She likes to shop, dance sleep, and she loves shoes. She also likes to be the boss.

“I am oldest of seven children here. I am the babysitter. I like it sometimes ­­– if I get enough sleep,” the 16-year-old says.

“We tell her, ‘If you go to bed at a normal hour, you will get up earlier,’” says her father Tony Gillott. “She likes to be the teacher and gives the other kids assignments and things to do.”

“I used to do that, but now I just say, ‘Who wants to go to the park?’ and they respond ‘Me, me, me.’ So I tell them the chores they have to do for me or we don’t go,” Angel said.

Being the oldest child in the Gillott family requires energy, strong will and a lot of feistiness ­- something Angel has plenty of.

Angel was born with pulmonary atresia, a heart defect where the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right pumping chamber to the lungs.

She needed immediate surgery to begin the three-part surgical process of correcting the problem. The first surgery took place a few days after her birth in a Washington, D.C. hospital.

Following the first surgery, Angel was able to travel home with her family to Lock Haven, but still needed to return to D.C. for appointments with the heart specialist.

“I remember she was not the most cooperative with the staff in D.C. The technicians would see her and would groan because she was a fusspot,” Angel’s mother Holly Gillott said. “They always had to sedate her for tests, even echocardiograms because she was not very cooperative.”

When Angel was about 6 months old, she went back to D.C. to have the second part of the procedure preformed. In the meantime, she was seen by her family doctor Henry Dietrich, M.D., at Geisinger’s physician office in Lock Haven for routine check-ups.

“Dr. Dietrich told us that the Geisinger doctors could continue Angel’s treatment here and felt confident in their ability to complete the third part of her surgery, the Fontan procedure,” Holly said. “He got us in to see Dr. Mangano from pediatric cardiology.”

Robert Mangano, MD, director of pediatric cardiology, examined Angel and ran additional tests including echocardiograms. He told the Gillots that it would be no problem to finish her treatment at Geisinger. It was a huge relief to the family, saving them from additional trips to Washington, D.C.

“When Angel was about 3 years old, we performed the Fontan Procedure here at Geisinger, which completed her treatment for her heart defect,” Dr. Mangano said. “With the Fontan, you take the two veins that bring unoxygenated blood back to the heart and attach them directly to the pulmonary artery. This bypasses the very small right side of the heart.”

Angel spent a few weeks after the surgery in the hospital recovering. Her mom stayed in the room with her while Tony stayed at the Ronald McDonald House in Danville.

“The nurses were amazing,” Holly said. “We were always in the room, and they would have people come sit in the room to give us a break.”

“They did a lot of special programs for the kids, like bringing animals in and special things to entertain the kids,” Tony said. “They brought a guinea pig in her room the one time.”

“I kind of remember it,” Angel said. “I remember feeding the guinea pig.”

The family even remembers the special attention the staff paid to trying to get Angel to eat.

“Dr. Mangano was trying to get her to eat. He went through a special effort to find her whatever she wanted: pizza, anything,” Holly said. “They gave her whatever she wanted, and they would search for it if it wasn’t there.”

After the surgery, the family could see immediate results with Angel’s appearance and her vital signs.

“You could see her coloring was a lot better. We didn’t realize what she should have looked like until she was out of surgery,” Tony said.

Dr. Mangano says Angel’s heart has been doing great since the surgery.

“Her cardiological status has been good. I have been watching her, and she has exceled along the way as far as her heart goes,” he said. “I couldn’t ask for anyone with a Fontan and single ventricle to be better than she has been.”

Unfortunately, another health problem would plague Angel and cause her to have to seek additional help from Geisinger Janet Weis Children’s Hospital.

Somewhere along the way, Angel’s doctors realized she had stopped growing. Dr. Mangano watched Angel closely, and during yearly blood testing, he found that Angel’s protein levels had gotten very low.

“The thing that I see with these kids is a disease that about 10 percent of these kids get. It’s called protein-losing enteropathy, where you lose protein in your bowels,” Dr. Mangano said. “But she didn’t have it. She was losing protein through her urine.”

Dr. Mangano referred Angel to Geisinger Janet Weis Children’s Hospital pediatric nephrologist Dianne Muchant, M.D.

“Angel was born with only one kidney. She developed a significant amount of protein in her urine. That’s concerning, because it can affect long-term kidney function,” Dr. Muchant said.

A kidney biopsy showed that Angel had a condition called focal segmental glomerulosclerosis, or nephrotic syndrome. The disease causes scarring of the filtering units in the kidney and cause a decline in renal function. The plan was to try to get the protein leak to slow down or stop with a series of medications. Unfortunately, the medications didn’t help Angel.

Dr. Muchant spoke with Dr. Mangano about increasing one of Angel’s blood pressure medications to try to control the protein leak.

“I wanted to increase a blood pressure medicine, because one of the side effects of it is that it decreases the protein in the urine. Collaborating with Dr. Mangano, I asked if I could increase the medication and take advantage of its side effects,” Dr. Muchant said. “Lo and behold, the protein leak significantly decreased and her kidney function has remained stable. She has done beautifully now for the past three years with just this blood pressure medicine. Right now, we are in a good place with her.”

The damage to her kidney from the protein leak will not repair itself, so Angel will need to undergo another kidney biopsy in the future to determine if there has been any further damage.

“At this point she does not need a kidney transplant, but we don’t know down the road,” Tony said. “Right now, her test results are better. They are not normal, but they are better. The doctor is happy with her levels.”

Angel visits Dr. Muchant every 6 months and Dr. Mangano so they can keep a close eye on her kidney and heart function.

“Geisinger has been a godsend for us. We are so pleased with the way the doctors work together,” Holly said. “She gets her bloodwork done at our local Geisinger office here in Lock Haven. They communicate, and if either doctor needs bloodwork, they order it at the same time. Dr. Muchant and Dr. Mangano are so quick about getting results back to us.”

Today Angel is working through her junior year at Central Mountain High School, where she enjoys studying cosmetology. She spends most of her free time dancing with the Haven Performing Hearts dance team.

“Cosmetology is one of my favorite classes. I want to start my own business. This hair I have,” she says, running her fingers through some of her braids, “I want to do this, but no one does it around here. I think I would like doing ethnic hair or extensions. I might have to get my cosmetology license. I don’t know, I am still thinking about that.”

She also would like to have her own dance studio in the future.

“I would like to have my own team. There is an extra room in this house, and I want it for my own studio, but I got to work on that,” she said, smiling playfully at her parents.

Angel has had two life-threatening health problems that are lifelong issues for her and her parents, but she never lets it get her down, according to Dr. Mangano.

“She’s a beautiful young lady, and she has done so well mentally and psychologically, despite the illnesses. She stays active and in good shape by dancing and does very well in school. She has done everything she has wanted to do, despite these setbacks,” Dr. Mangano said. “She acts like a sassy teenager that you see anywhere. She has been a strong person through all of this.”

Children’s Miracle Network at Geisinger has provided funds for the pediatric catheterization lab at Geisinger Janet Weis Children’s Hospital where Angel had multiple heart catheterizations. State-of-the-art echocardiogram machines and EKG machines used during her yearly visits and checkups have been purchased with donations.