Hope for a 'heart baby'
After spending time with 6-month-old Kenna Jane Aldridge, she seems like any other baby.
She loves playing with her grandparents, Kenny Aldridge of Clyde and Kim Macy of Asheville; letting her mom, Amber Aldridge of Asheville, dress her in cute clothes and relaxing with her dad, Kris Martin of Asheville, in her baby Jacuzzi.
Yet, going vertically down the center of her chest is a faint scar from the surgeries baby Kenna has had to undergo.
Kenna has a rare heart condition known as Hypoplastic Left Heart Syndrome (HLHS), where the left ventricle of her heart is severely underdeveloped, resulting in the right side of her heart having to work twice as hard in order to function properly.
Kenna and other babies born with birth defects to the heart are known as “heart babies.”
“Birth defects of the heart are the most common birth defects for babies,” said James McGovern, medical director of pediatric cardiology for Asheville Cardiology Associates and Mission Health, who has cared for Kenna.
However, of those babies born with birth defects of the heart, HLHS is one of the most rare types, occurring in less than 5 percent of those babies, McGovern said.
When Amber was five months pregnant, the doctors could not get a proper view of her baby’s heart. After sending her to several local specialists, Kenna was diagnosed with HLHS and sent to Levine’s Children’s Hospital in Charlotte. Those doctors diagnosed Kenna with heterotaxy syndrome, which can result in birth defects to the gut, heart or lungs.
Kenna’s version of heterotaxy syndrome, McGovern said, is known as polysplenia, or the presence of multiple tiny spleens. Cardiology experts think that heterotaxy syndrome might have caused Kenna’s heart condition, HLHS, but more research is needed to prove this conclusively, McGovern said.
Despite these early signs of heart conditions, Kenna was born on New Year’s Day 2013 after her heart rate dropped, prompting doctors to perform an emergency C-section.
“That day was the scariest time of my life,” said Martin, Amber’s boyfriend, who was present during Kenna’s birth.
Kenna underwent her first surgery a few weeks after birth to repair her mitral valve, a crucial passageway that allows blood to circulate properly through the left side of the heart. Yet, the problem was still not fully corrected. If her heart condition went unattended, McGovern said, fluid would begin to build around her lungs, leading to sudden heart failure.
“A lot of birth defects don’t have symptoms and things go unnoticed that could turn into bigger problems in the future,” McGovern said. “Going to the doctor is critical for getting heart defects detected.”
Kenna fits into this category of showing few symptoms. Amber said Kenna always had a really good appetite and is growing at a normal rate.
Because Kenna’s heart defect is so rare, few medical resources were available to guide Amber to the next step for addressing Kenna’s heart condition. Instead, Amber took it upon herself to research the best options for her daughter.
“Kenna’s mom did an enormous amount of research and even taught me and my staff a lot about what’s going on in the field,” McGovern said. “Amber has a lot of intelligence and energy and will stop at nothing to advocate for her child.”
The first option, Amber learned, was for Kenna to receive a mechanical value to substitute for the mitral valve; yet this option would require periodic surgeries throughout her childhood to replace the valve as Kenna’s heart grows.
Instead, Amber discovered a cutting edge procedure where a tissue valve, called a melody valve, is enlarged through a catheterization process, allowing the heart to work properly while still using Kenna’s own anatomy.
The surgery has only been performed 12 times by Dr. Ram Emani at Boston’s Children’s Hospital, yet all the surgeries have been successful.
After choosing this cutting edge surgery as the next best step, Amber, her boyfriend and Kenna made the trip to Boston on June 7 and returned 21 days later on June 28.
Once they arrived, instead of having the melody valve replaced right away, the doctors decided to have another part of her heart, the posterior leaflet, reshaped, which would set Kenna up for another surgery this August to stretch her mitral valve.
If all goes as planned, this expansion of the mitral valve will delay Kenna from receiving a melody valve replacement for another year, Amber said. The goal is to use as much of Kenna’s own anatomy for as long as possible.
“Having a baby with these kinds of problems is life changing,” Amber said. “I haven’t been able to go back to work yet. It’s like a full-time job [caring for her] with doctors visits and keeping the bills straight.”
Nearly every day of the week since they came home from Boston, Amber has had to take Kenna to doctor’s appointments and physical therapy sessions to strengthen her heart.
“It’s hard not knowing what to do and knowing if it will take years off her life,” Amber said. “So far, everything’s gone well enough where I feel like I made the right decisions. I’m glad we went up to Boston because they’re top notch.”
Throughout all of the surgeries, Amber said she has been highly frustrated with the lack of resources, support groups and guidance available to parents of children with heart problems.
She has networked with a few support groups, such as Mended Little Hearts of Asheville, but has received most of her support from online discussion groups, such as Heart Mamas, that allows mothers of heart disease children across the country to share their stories and swap advice.
Other organizations, such as Heart Heros and Gracie’s Gowns, have sent Amber hospital capes for babies who have survived various heart conditions.
Yet one of the biggest challenges has been finding the funding to pay for all of Kenna’s medical bills.
The surgery bills have been the biggest expense. Other medical bills, including the shots Kenna receives every 30 days for RSV (respiratory syncytial virus) to protect against fluid build-up around her heart, are costly. Not to mention the motel, food and transportation expenses incurred from the surgeries.
While Amber has insurance, she said she makes too much money to qualify for Medicaid.
Family and friends living in Haywood County have pitched in, including her childhood friend, Austin Thompson, who offered a donation through his company, Evergreen Packaging, Inc. in Canton, as well as her brother-in-law and his co-workers. Local churches have also donated prayer blankets.
Likewise, Amber’s sister, Whitney Queen of Bethel, donated a week’s collection of $520 from her church, Burnett Siding Baptist Church in Canton, to support Kenna.
Queen, a mother of two small children, flew up to be with her sister in Boston for part of Kenna’s surgery.
“My sister is a very determined person, very goal-oriented,” Queen said. “I almost feel guilty she has to go through all this, since I have two healthy kids. It’s a lot for anyone to deal with, but she’s taking care of it.”
Amber’s parents said they have both been there to support her and Kenna as much as they can.
“As much as we want to support them, we can’t help them because we don’t know what to do,” Kenny Aldridge said. “If she’s upset and doesn’t know what to do, we’ll just sit there and listen to her vent.”
While the grandparents were both present at Kenna’s birth, neither one was able to be with her in Boston.
“I’m sure it was hard on Amber and the baby to be in Boston without her parents beside her,” Kim Macy said. “That was the hardest part for me too.”
Martin, who works at Verizon Wireless in Asheville, has gone shopping for Kenna while she has been in the hospital to buy her “Daddy” clothes, Amber said.
He can’t handle seeing her get her blood drawn,” Amber said. Yet in spirit he’s always been there for Amber and the baby.
“I keep trying to put myself in Amber’s shoes,” Martin said. “Amber has really saved Kenna’s life with all the research she’s done. I don’t know what we’d do without her.