'Talon's Heart Journey' reaches one year

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Boy battling rare heart disease to celebrate first birthday Saturday

By Zac Oakes

Talon Perkins lies in the floor of his family’s home. His father, Kyle, sits next to him, dangling a balloon above him. Talon reaches and hits the balloon with his hands and feet with a contagious laughter as his parents look on with faces lighting up with enjoyment.

“He loves balloons,” Kyle says. “He has a ton of toys, but balloons are probably his favorite.”

“Luckily we have a bunch of balloons ready for his birthday party on Saturday,” Beth, Talon’s mother, says. “He is really going to love it.”

Talon’s first birthday is on Saturday, July 29. Kyle and Beth have a party planned for him, complete with a Finding Nemo theme.

While the first birthday for any child is a milestone, it is especially an important one for Talon.

Talon was born 6-and-a-half weeks premature and was born with multiple congenital heart defects. Among those is Pulmonary Vein Stenosis (PVS), a rare and serious condition in which there is an obstruction or blockage in the blood vessels that bring oxygen-rich blood from the lungs back to the heart.

In some cases, only one pulmonary vein has the obstruction, but most often it occurs in multiple veins simultaneously. The stenosis occurs due to an abnormal thickening, which narrows the walls of the vein and limits the blood flow. Essentially, it makes it difficult for the heart to get oxygen to the rest of the body. There is no known cure for PVS.

Making it to a year old is a major milestone for Talon, Kyle said.

“The older a child with this disease gets, the better their chances are,” Kyle said. “A year is a big milestone, two years is even bigger, so we’re hoping we can keep fighting it off for a year or two as he gets bigger and stronger… Making it this far really is a big deal.”

However, with no cure, the disease can reoccur at any given time, even years down the road with few problems.

“It’s just a constant fear of it always coming back,” Beth said.

Talon was born July 29, 2016, at Kosair Children’s Hospital in Louisville. Beth had been unexpectedly put on bed rest in the hospital two weeks prior.

Doctors determined that Talon was not growing properly in the womb, so they decided to prematurely deliver him.

“They thought they could get him to grow better on the outside than on the inside, basically,” Kyle said.

Beth was transferred from her normal doctor to a high-risk doctor at the 20-week ultrasound appointment. She then began regular appointments every two weeks in Louisville, but everything seemed to be going well.

“We knew there was a possibility that they might take him early, but we went into that appointment [in which she was hospitalized and placed on bed rest] just like we had the previous appointments,” Beth said. “Kyle and I had our gym clothes. We planned on going to the gym and then out to eat later. They kind of shocked us when they said they were going to admit me.”

Talon was born weighing only 2 pounds, 14 ounces and he was 15 inches long. However, Beth said, the doctors were unaware of the heart defects that were present with Talon.

“I have often wondered if they knew about the heart defects, would they have given him even just a couple extra days?” Beth said. “Maybe that might have made a difference.”

Shortly after birth, Talon’s oxygen levels began dropping. Doctors performed an Echocardiogram (an ultrasound scan used to look at the heart and nearby blood vessels) to determine the cause of the low oxygen levels.

“That’s when we found out about his heart problems,” Beth said.

Talon was born with three holes in his heart, in addition to the PVS. The holes in his heart are somewhat common, according to Kyle and Beth.

“At first, we thought that was all we were dealing with,” Beth said. “Initially, we were devastated that he had these holes in his heart and that he would have to have open heart surgery, but we had no idea about the PVS until we got to Cincinnati. That’s when they told us.”

In his first year, Talon has had six surgeries. Five of those surgeries have been on his heart, and another to implement what is called a G-tube to assist with feeding issues, a common issue that occurs in children with heart defects.

The children have to work so hard to breathe, which leads to difficulty in getting the child to feed.

Congenital heart defects are the most common birth defects, according to the National Heart, Lung, and Blood Institute, affecting 8 of every 1,000 newborns. Each year, more than 35,000 babies are born with congenital heart defects in the United States.

PVS is one of the more rare congenital heart defects. There are not any known statistics on how many newborns are affected by PVS in the U.S. each year.

However, an online support group that Kyle and Beth are part of only has 560 members. It is one of the largest online support groups for PVS.

The online support group has been “bittersweet” for Kyle and Beth. It provides hope in some instances, but a “harsh reality” in others when they see success stories of children who have went on to live mostly normal lives, while seeing others who have not been as lucky.

“We’re very blessed to get this far, but it’s been a hard road,” Kyle said. “… But there are a lot of kids who go on to live normal lives. So there is hope that he will be able to grow up and know that he was in a hospital so often.”

Boston Children’s Hospital has arguably the most renowned PVS program in the country. Kyle said the only other hospital in the U.S. that has a specialized PVS program is in Texas.

The family has made one trip to see the specialists in Boston so far.

“People come from all over the world to Boston to be treated for this disease,” Kyle said.

The doctors in Boston recently completed a study in which they use a chemotherapy drug to slow the progression of the stenosis. It is a new approach, but has shown success in the study.

The cells that are causing problems with Talon are somewhat similar to tumor cells, Kyle said, so the chemotherapy drug can target those cells and slow the progression of the stenosis.

Talon was not able to be part of the study, but he is taking part in a case-by-case trial of it at the Boston Children’s Hospital. He started the chemotherapy drug last Sunday.

Kyle said that it is important for them to be proactive in order to avoid the need for a lung transplant, especially due to how quickly things can change.

“We’ve had to be admitted unexpectedly twice in Cincinnati because of how quick things can change,” Beth said.

PVS unfortunately has a high mortality rate, even as high as around 40-50 percent. Kyle and Beth said a specialist in Boston told them it could be even higher.

“It’s like a punch in the gut when it comes to your child,” Beth said.

Despite the condition, Talon is still a very active child. He enjoys playing with his toys, looking at books, and making a variety of noises, despite a paralyzed vocal chord that occurred during one of his first surgeries.

“All things considered, he has done really well,” Beth said. “The open-heart surgeries really set him back… and he has had a lot of flat time, being in the hospital, being intubated… but we are so grateful that he has came this far.”

For the Perkinses, there is always good with the bad.

“It’s very much so the happiest time of our life and the worst time,” Beth said. “We have this sweet little boy and he is just amazing.”

“All the good is mixed in with all the work that we have to do on a daily basis,” Kyle added.

Kyle and Beth said this has turned their world upside down. Talon has to be monitored regularly to make sure he does not pull his oxygen tube out. Beth said he has recently discovered the tube and often pulls it out to try chewing on it.

Beth said she constantly sanitizes and disinfects around the house to lower the risk of exposing Talon to potentially getting a cold that could hospitalize him.

Talon usually wakes up around 7 a.m., according to Beth. Kyle leaves to go to work at Altec Industries in Elizabethtown at around 6 a.m. Beth worked as a physical therapist before leaving so that she could take care of Talon full-time.

“Beth takes care of him basically by herself during the day,” Kyle said. “I do everything I can once I get home at about 5:30 or 6 p.m. to help her out.”

Throughout the day, it is a constant cycle of feeding (every four hours), medications, physical and speech therapy, practicing feeding through a bottle, playing, etc. Through multiple trips to the doctor, Kyle and Beth have learned various practices and techniques to ensure proper care for Talon.

“We really have to almost be like nurses in our own home,” Kyle said.

Many parents take a “let them cry” approach when it comes to small children, but that is not an option for Kyle and Beth.
“Crying takes energy, and we don’t want him to expend a lot of energy doing that, so we can’t let him cry for very long,” Beth said.

Luckily for them, Kyle said, Talon sleeps well throughout the night, allowing them to get some rest, as well.

Kyle and Beth started a page on Facebook called “Talon’s Heart Journey” to provide frequent updates on Talon’s condition and news that they receive from doctors. Over 1,000 people follow the page.

Beth said she receives several messages on the page, often from people she does not know, expressing their thoughts and prayers for them. She said it is very encouraging to know people from all over the country are praying for them.

They hope the page can provide awareness for congenital heart defects and PVS.

“A lot of people are unaware of these types of diseases that children can be born with,” Kyle said. “We hope we can spread the word about it.”

Support locally has been excellent, Beth said. Although she is not originally from the area—she is originally from Cincinnati—Kyle is a Campbellsville native and a Class of 2000 graduate of Campbellsville High School.

The couple has been married for almost six years and moved back to Campbellsville about two years ago from Elizabethtown.

“Everyone from our church [Campbellsville Baptist] to family and friends, teachers I have had in school, to people that don’t even personally know us but see that we are from Campbellsville and may know my parents or just seen it on Facebook… everyone has been so supportive,” Kyle said. “Our neighbors have been great. For example, Coach [Dale] Estes at Campbellsville High School mowed our yard and took care of the pool while we were in Boston, and we had neighbors bring us food and check in on us. We’ve really had a great support system and we are so thankful for everyone who has helped us out.”

Campbellsville Baptist held a fundraiser lunch last Sunday to raise funds to donate to the Perkinses, and Jason England at Campbellsville University held a fundraiser softball tournament, as well. Kyle and Beth said they cannot express enough gratitude for everyone who has came together to help them.

“People have consistently shown us love and support, way more than we could’ve dreamed of,” Beth said. “They just keep helping us over and over. This community has really just wrapped their arms around us, and I am not sure we can ever fully express our gratitude. We’re so thankful for everyone who has helped us out in any way.”

Thankfully, Kyle said, Altec has been fantastic to work with in letting him take time off to travel to Boston and Cincinnati while providing great insurance for their employees.

And with more than $1 million already racked up in medical bills through the first year, Kyle and Beth say they are beyond thankful for their insurance, as well as the medical expenses taken care of by Medicaid.

“That has really helped take some of the stress away,” Kyle said. “I’m very glad that Altec offers such good insurance to their employees.”

They say they are keeping up-to-date with ongoing discussions about healthcare on the national scene, knowing how much assistance Medicaid has provided for them so far, as well as allocations for congenital heart defects in infants.

They say they hope to see more funding allocated toward congenital heart defects. A group that lobbies for funding toward these conditions recently came away with about $4 million, Kyle said.

“But really, when you consider the bills that he has already had, that is not much,” Kyle said. “If we had to pay just a quarter of that, we would be bankrupt.”

Kyle said they barely qualified for Medicaid and were denied more than once. It is a secondary insurance for them.

“We were denied multiple times, and it took forever to get that,” Beth said. “Before he was born, we didn’t have a thought either way about Medicaid, but now as we are on this journey, we see how important it is for those who really do need it.”

Taking care of Talon is not a job that just anyone can do, with the various medications, complex feeding procedures, etc., so Beth said it would be impossible for her to leave Talon with family members to go back to work.

In addition to medical expenses, Beth said travel expenses have racked up, including a hotel stay in Boston that was more than $4,000 over the course of 17 days.

But again, Beth said two wonderful companies, Lifeline Pilots and Angel Flights, which flew them to and from Boston for free on a private airplane, assisted them.

“That took a great amount of stress off us,” Beth said. “I can’t say enough good things about them.”

Throughout the whole process, the Perkinses said their faith has been a key aspect.

“This can be a platform to show what God can do with Talon,” Kyle said. “We know it is in his hands.”

“It really is in God’s hands,” Beth added. “At the end of the day, we’re aware that no matter what developments happen, it is in God’s hands.”