Feb 9, 2019 7 min read

Rylee and Lily are two little heart warriors fighting congenital heart defects – which are the most common birth defects in the United States, affecting 40,000 babies annually.

One in 110 babies is born with some form of CHD, and roughly 2 to 3 million Americans live with CHD. However, that number could be much higher since the United States does not track CHD patients beyond early childhood.

For many forms of CHD, surgery is not a cure, and can be a lifelong condition requiring specialized care, additional surgeries and medication. About 25 percent of children born with CHD need heart surgery or other interventions to survive.

Rylee Baker and Lily Ayres were born with hypoplastic left heart syndrome, or HLHS, which is when the left side of the heart is underdeveloped, putting strain on the right and blocking the flow of oxygenated blood from the lungs. Without treatment, babies born with HLHS can die within the first days or weeks of life. Treatment options include a series of operations including the Norwood Procedure, Glenn Operation, and the Fontan Operation; or a heart transplant.

Rylee will undergo a heart catheterization soon to determine her eligibility for a third and final surgery, the Fontan Operation. If the pressure in her heart is acceptable, her doctors will move forward with the surgery later this summer.

“The surgery will reroute her valves so the blood flow will go directly to her legs, brain, lungs, and organs,” said Rylee’s mother, Jeri Vitteck of Washington. “This will allow the right side to do all the work since the left side was not developed.”

Vitteck remembers that day she found out her daughter had CHD, and she credited an observant technician for noticing the defect.

“I just wanted her to live. That was all I was thinking about. I just wanted her to have a chance to live,” Vitteck said. “She saved my daughter’s life. If I didn’t know early on, my daughter’s chance of survival could have been much less, and she could have died in a matter of hours.”

Vitteck is now spreading awareness about CHD whenever she can, and would like to change the protocol for prenatal testing. Because her doctors knew Rylee’s condition before birth, they were able to keep the flaps in her underdeveloped heart open until she had open-heart surgery. Those flaps naturally close after birth, but when there is a defect, it can be catastrophic.

“A child with CHD is born every 15 minutes,” Vitteck said. “We should be doing more.”

Rylee, who is 18 months old, is roughly five or six months behind in overall development, although she is progressing. She began sitting up in January and is now trying to crawl.

“She is one happy baby,” Vitteck said. “She never cries and is always smiling. She wakes up in the morning, kicking her feet. She is pure joy.”

Although taking care of a medically fragile child is not easy, Vitteck is trying to “turn a negative into a positive.”

“I am just like every other mom, just with extraordinary things going on. Parents of special needs children see the world differently. We understand that everything isn’t perfect, but we take a bad situation and make the best of it. There are times when I am dying inside. I cry and I can’t stop crying; but I can’t do that in front of Rylee. If I feel fear, then she feels fear. I stay strong for her.”

Vitteck’s three older children, ages 12, 11 and 19, also help take care of Rylee. They are a family, but they are also a team.

“They are so helpful. They can take care of Rylee as well as I can. They are wise beyond their years. They are attentive to her and very understanding. They will do anything for her.”

Rylee’s days begin with medication and feeding. Several times a week, early intervention services provides therapy to assist with Rylee’s overall development.

As prevalent as CHD is, Vitteck is surprised and disappointed by the lack of support available locally for parents of children with CHD. Her family participated in an awareness walk recently, but it was three hours away and they wished there was something closer because driving that far with Rylee is difficult.

“I wish there were more support groups for mothers going through this,” Vitteck said. “There are more of us than people know. CHD isn’t something people know about so I want to spread awareness when I can. It is always best when a mom finds out early that a child has CHD. There are things that can be done if you know what it going on. Awareness can save lives.”

The national Congenital Heart Defects Awareness Week began Thursday and continues through Valentine’s Day.

Many other families in the area are also facing CHD. One of those children is 3-year old Lily Ayres, who lives in Canton Township with her father, Clifford.

A single father, Ayres cares for Lily on his own. Lily was born with HLHS as well. She had the first two surgeries, but doctors determined Lily was not a candidate for the third and final surgery due to a leaky valve in her heart. The only option is a heart transplant, and Lily is currently on the transplant list, but has been waiting for a new heart since July 2017.

Unfortunately, suitable donor hearts for babies are in short supply. Ayres is happy that Lily is doing well, and wouldn’t mind waiting until she was bigger and stronger to have the surgery.

“I would love it if her transplant was already done, but the doctors said a transplant lasts about 10 to 15 years,” he said. “The sooner she gets one, the sooner she will need a new one.”

Lily was also born with Moebius Syndrome, a rare neurological disorder that affects the muscles that control facial expression and eye movement. She recently had surgery to release her gums from her cheeks.

“We will give it some time and see how she heals,” he said.

During the surgery, they checked her esophagus for damage from the breathing tube and other things, but everything looked good. They will meet with the feeding team this month to discuss the possibility of eliminating her mid-day feeding, which would allow her to feel hungry. That would mean they could start Lily on soft foods, just like an infant.

“It takes her a long time to recuperate from things, longer than other kids, so we will give her time and see how it goes,” he said.

Ayres said Lily is learning more each day. She knows about 70 words in sign language. She can say “Dada” and is starting to put syllables together. He and Lily typically stay home, except for doctor appointments and hospital visits. Her day begins with medication and feeding, then she plays between visits from her early intervention therapists.

Ayres explained that they don’t leave home much for an important reason.

“What people don’t think about is that she can’t be around a lot of people, a lot of germs,” he said. “I don’t like to go out during cold and flu season. If she gets sick, it takes a long time for her to get over it. If I get sick, I could pass it to her.”

If she gets sick, she wouldn’t be eligible for the transplant if the doctors called to inform them that a heart was immediately available.

“I can’t take that chance,” he said.