COURAGE, HOPE AND HEART
Caring for a daughter with a congenital heart defect has a deep emotional and financial impact on one N.M. family as her parents try to be strong for her and her siblings while she fights the odds
elowe@sfnewmexican.com
Amonth and a day before her fifth birthday, Lexi Schneider lay on a hospital examination bed as technicians scanned her heart, her 50-50 odds of surviving to see her party weighing down the room.
“What are we looking at?” Leslee Schneider whispered to her husband, Jason. “I can’t figure it out.” “Me neither,” he whispered back. Their child, choosing to concentrate on something more interesting, didn’t see the fuzzy images of her deformed heart illuminated on the computer screen in August or hear the mouse clicks as the technician took snapshots from an EKG test.
Instead, Lexi focused on the songs and story of DreamWorks Animation’s Trolls. She knew them from, well, heart: Lexi memorized each scene from hospital beds through the years as doctors tried to determine if her heart would quit.
As time passed and the trolls went from one song to the next on the screen, Lexi lounged like an untethered puppet straining to keep her eyes on the musical. Hey! I’m not giving up today There’s nothing getting in my way. The technician maneuvered the ultrasound wand around the faded scar on Lexi’s sternum. Leslee stroked her daughter’s hand. Jason stared at the images, trying to find the part of Lexi’s heart that looks like a bird skull. They tried to engage with Lexi, but she preferred listening to Anna Kendrick and Justin Timberlake.
An air of boredom almost masked the tension. Almost.
Leslee’s jaw clenched and pulsed, betraying her calm demeanor as the technician focused on a section of Lexi’s heart. Another technician came in to help. Jason and Leslee exchanged looks as the technicians muttered jargon.
The question hung unspoken in the room: Could this be the beginning of the end?
A marathon
Haunted by exhaustion, heartbreak and perennial fear, Leslee, 31, and Jason, 32, are among thousands of parents in New Mexico trying to shepherd their child through a journey in which death could lurk in each dawn and hope is tied to IV tubes. Whether the fight be with cancer, cystic fibrosis or birth defects, whether the hometown is Santa Fe or Los Alamos or Las Cruces, parents like the Schneiders juggle the burdens of their child’s well-being with the rest of their lives and the lives of others who depend on them.
“It’s an emotional roller coaster,” said Lauren Huston of Santa Fe, whose 3-year-old daughter, Maya Salviotti, has acute lymphoblastic leukemia.
Huston acknowledged parenting a child through health crises and hospital visits is exhausting. Like an unwanted shadow, she said the anxiety over her daughter’s future follows her even when she has to be optimistic and upbeat for her daughter.
“We carry the emotional burden of this for her,” she said.
For Lexi and her family, the burden is the result of a birth defect: Lexi was born with an underdeveloped left side of her heart, a type of congenital heart defect. The problem, perhaps more common than one might think, occurs in 1 in 110 births, according to the Congenital Heart Public Health Consortium. An average of 269 babies are born in New Mexico each year with some type of heart defect.
Lexi is one of them. She lives in Bosque Farms near Albuquerque with her parents and two brothers, 2-yearold Caleb and 7-year-old Levi. As she plays and goes to kindergarten, Lexi doesn’t think about the fight she’s enduring, the risks of a wrong fall or overexertion, or what doctors say will be an inevitable heart transplant. That’s for her parents to worry about. Lexi ponders bunnies, fishing and whether her brothers are being nice.
She knows she has a special heart, which explains the surgeries, medicine and checkups that have become constants in her life, just like she knows her favorite Disney princess is Ariel.
But her parents, held hostage by Lexi’s health, have seen their emotions, faith and financial future rocked as they cope not only with having a “heart kid,” but how caring for a chronically ill child transforms the family.
“We just do the best we can,” Leslee said. “I know it’s not going to get easier.”
When Lexi was still a tiny image on an ultrasound screen, Leslee didn’t think much of a Friday checkup 24 weeks into her pregnancy. Then the technician flipped on the lights and ran out of the room to order a heart anatomy scan. Still, Leslee didn’t panic and refused to acknowledge the possibilities throughout the weekend as Jason researched conditions or reasons for the scan.
On Monday morning, the doctor told them the baby had the worst form of the heart defects Jason had researched. Hypoplastic left heart syndrome is fatal without surgery soon after birth, the doctor told them, and even then survival is a bet on faith. The couple cried in their car together for 20 minutes before wiping their tears to start the slow journey toward hope.
“We had to go back to normal life even though we had this huge blow,” Leslee said.
They were given three options: abort the baby, let it develop within its natural life span or take surgical measures to address the defect. They chose to fight. The battle is worthy of a book. Each chapter — the nearly seven-hour drives to a children’s hospital near Denver for Lexi’s birth and three subsequent surgeries, the white-knuckle tests that come every six months, the not knowing what each day will bring — is harrowing.
In August, Lexi and her parents walked out of the echocardiogram test at Albuquerque’s Heart Center at Presbyterian before Trolls’ last musical number. They waited in the hospital’s Princess Room. Jason sat next to Lexi on the examination table as she colored in a booklet hospital staff had given her.
Lexi kept coloring around Dr. Jennifer Davenport’s stethoscope during the final checks, pausing only to don the stethoscope to listen to her heartbeat. The cardiologist then told the Schneiders the best news they’d ever heard during a hospital checkup.
“She overall looks better,” Davenport said.
Leslee exhaled and Jason beamed at Lexi. The doctor went on about possible issues and needs for continued monitoring, but the message was upbeat despite the many unknowns.
“We’ll just plan on you getting better, right?” Jason said to Lexi.
Leslee walked behind Jason and Lexi as they left the room, releasing tension she had been holding for weeks leading up to the appointment. Maybe she could finally sleep without anxiety clutching her mind.
Then again, a lot changes in six months between checkups.
“It was just a huge relief,” Leslee said. “We’ll always be a little bit burdened by the unknown with her, but right now God is providing for her.”
‘I don’t want the anxiety’
Leslee and Jason said they have been battered by fear, but not conquered by it. Even Lexi hasn’t wilted, walking through hospitals like a princess on an excursion.
“She’s very brave and tenacious,” Jason said.
Leslee said she doesn’t know why God chose them for Lexi or her for them, but she believes there’s a reason. She wants her daughter not to feel defeated by her challenges, but strengthened by what she brings to the world.
“We tell her that God chose her for a special job to show how when you’re hurting, how you can get through it,” Leslee said.
Lexi doesn’t have to look hard for a role model.
Leslee, a teacher, acknowledges she’s anxious every day. She tries to be as diligent a lifeguard to Caleb and Levi as they swim in their above-ground pool with Lexi, but it’s hard when she knows her daughter could suddenly lose consciousness if her damaged heart fails to pump enough oxygen. She unflaggingly attends to her children when their shrieks of play turn to pain, but a small
dooms d voice can’t help but worm through er thoughts when she hears Lexi cry ut. “I don want the anxiety,” Leslee said. “I want just enjoy my girl. I mean, dang, toy there’s nothing wrong with the girl.”
While eslee’s worry is a constant hum, Jas ’s worries are blocked, if only for ort periods, by his daily routines. He was an engineer at Sandia National laboratories. When Jason gets home from work, he helps with dinner or takes kids outside while Leslee cooks. Eh morning, he packs their lunches d gets them up while Leslee gets rea for work. Leslee takes the kids to school for part of week and home-schools them for couple of days. Any time Lexi goes to the hospital, Jason and Leslee take her together emotion breakdowns strength r in order help Lexi. each other and during to show At the same time, both try hard to prioritize spending moments with their boys. to appreciate “Something pen to a our the catastrophic time kids, while and we could we just have hap of have them,” Leslee said. Lexi’s health has cost the Schneiders more the anxiety. Jason said they eas heir ily reach their annual out-of-pocket limit just with Lexi’s hospital bills. The family budget revolves around the por ney blood dry six-month tion of money set aside for checkups, the biweekly prescriptions and dreaded hospital stays.
“I couldn’t imagine doing this without insurance,” Jason said.
Although many marriages are destroyed by the stress of caring for a child who is chronically ill, Leslee said her relationship with Jason has deepened.
“This was the first giant trial we’ve ever had to face,” she said. “We’ve definitely gotten stronger through it.”
In building that strength, they said, they’ve relied on prayer and fellowship at their Baptist church.
So far, their prayers have been answered.
On Sept. 9, Lexi turned 5 — the marker that both beckoned and frightened her parents. She’s starting to ask more questions about her heart, but she remains the kid who catches grasshoppers in her hands, applies hot pink lipstick before going swimming and chooses math homework before reading. She says the best thing about being 5 is that she is allowed to chew bubble gum and fish with a rod similar to her big brother’s.
“I don’t feel bigger,” Lexi said. “I just seem bigger.”
Leslee said Lexi’s odds are now at 80-20 to grow old enough to vote. Yet a few weeks after celebrating, Lexi returned to the emergency room, complaining of an abnormally fast heart rate. While she was sent home from the hospital on the same day, it was a jolt from the Schneiders’ brief relief.
At Lexi’s birthday party, Leslee’s mind raced through the what ifs of the
past five years, savoring the moment as she watched her daughter twirl in a new sapphire gown. Actually, there was more than twirling. Lexi seemed to take flight like a fairy dancing with the yellow butterflies flitting around her.
If you listened hard enough, you could almost hear the music one more time. If something goes a little wrong Well you can go ahead and bring it on ’Cause if you knock knock me over, I will get back up again.