Child’s heart still beats against all odds

By Mike Ford, The Delphos Herald
Published:  Friday, February 15, 2008 (1 year, 12 months ago)
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Kailey WrightDELPHOS — When Kailey Wright turns 13 years old Sunday, the occasion will mark yet another year the local youth has defied doctors simply by being here. Her heart is not “supposed” to be beating, according to former medical prognoses.
Today, her love of life is celebrated as Valentine’s Day marks the end of Congenital Heart Defects Awareness Week.
Laura Wright, 43, lived in Asheville, N.C. when her second child was born.
“On Feb. 17, 1995, we had a baby girl doctors had told us was healthy. Twenty-four hours later, they were ready to release us when the pediatrician thought he heard a slight murmur,” she recalled. “The next thing we know, a pediatric heart specialist, Kailey’s pediatrician, my doctor, my nurse, the charge nurse, a chaplain and a few others came walking into my room. At that time, my whole world crashed; I can’t even try to explain how I was feeling.
“The next news we received was that she was dying and she was about to be life-flighted to Duke University Medical Center. She was diagnosed with Hypoplastic Left Heart Syndrome and Critical Aortic Stenosis.”
Left Heart Syndrome, as it’s commonly known, designates the left side of the heart as underdeveloped, according to the American Heart Association. Kailey appeared normal because, Wright says, the pediatrician did not catch the problems when looking at ultrasound images. Critical Aortic Stenosis meant her aorta was closing. Wright says this is what “did Kailey in” the most.
“They brought her to my room in an incubator for us to say our good-byes. How, in a matter of a couple hours, can we go from a healthy child about to go home to them taking her from us and putting so many wires and machines on her and telling us she’s dying and for us to say our good-byes? I just didn’t understand,” Wright said.
Kailey’s heart problems created a list of issues which continue to affect her.
“They told us her brain was hemorrhaging and they felt it would not be long before she died. They took us over to her bedside and I got to touch my little angel but I remember her being so cold and so dark-colored in all of her limbs. They explained this was because she no longer had circulation to her extremities and that this was further proof she was slipping away more and more each moment,” she said.
However, baby Kailey displayed a “mind over matter” quality that would stump her doctors.
“We got a call at 3 a.m. that said she was crashing and to come quick. Her body had shut down and was turning a dark color. They said she died but we’re not sure. She had a stroke and we were waiting for the right side of her brain to hemorrhage so they could pronounce her dead but she had a different idea. She just fought. They had a catheter in her and she urinated in it, so that gave us hope because it meant her kidneys were working. I can still remember all the doctors downplaying this, saying it changed nothing but we said ‘oh, yes it does’,” she recalled.
Wright remembers doctors giving her three options. “Compassionate Care” would mean taking her baby home and let her die; this option was never considered. The second option would be a heart transplant and the third option consisted of three stages of surgery. The first was simply to get Kailey’s tiny body to gain weight so she could undergo the second surgery.
“She held on, so we insisted they do the first surgery and that was seven days later. They said she wouldn’t survive it but she came through; we were given that death sentence for a couple of years. Kailey spent the next month in the Intensive Care Unit on and off of the ventilator. They told us that even if she survived all of this, she’d be more or less a vegetable because of the bleeding in her brain. They said her arms and feet would probably need to be amputated because they were still black from when she was dying. Over the next two months, her circulation miraculously started putting color back in her arms and legs and within another month, she was no longer in danger of losing any part of her limbs,” she said.
The second procedure was performed when Kailey was 4 months old. A gastric tube through which to medicate her was installed. She left the hospital at 7 months old but would be back again and again.
“She had the third surgery done at 3 1/2 years old. She did really well and made it home after a month in the hospital,” she continued. “The next day after we got her home, she crashed on me and ended up in the emergency room. She was dark blue from head to toe in a matter of minutes and was having a hard time breathing. She had fluid around her heart and they said she wouldn’t survive a trip to Duke.
“Our local pediatric cardiologist had gained a partner who had been an intern at Duke when Kailey was there. He had been told he would never see Kailey again because they didn’t expect her to survive but there she was and he was shocked. He told us she needed a heart tap and he had no choice but to attempt it. He did a great job and pulled eight ounces of fluid from around her tiny little heart with a long needle. He said when she was stabilized, she would be life-flighted to Duke but the next morning she was fighting off the ventilator and was asking for me, so they thought she’d be OK and she didn’t have to go to Duke.”
Kailey is mentally-challenged, has epilepsy, hypotonic cerebral palsy, an underactive thyroid, hearing problems because of infections and has had two eye surgeries. Nonetheless, she pesters her 16-year-old brother, Dylan, as much as any younger sibling is “supposed” to.
“He’s not embarrassed by her at all and he’s the first person to stand up for her,” Wright said.
The family moved back to Wright’s native Delphos in 2000 and the youngest is enrolled at Marimor School. She says Kailey functions at the level of an average 4-year-old but is benefiting tremendously from the education she is receiving.
Wright has found much support in the community, including an aunt, Brenda Bellmann, who is a nurse and “is always there when I need her.”
She also benefits from Delphos Visiting Nurses and Hospice and a state program that helps care for Kailey so her mother can work and have a social life.
Continued care is received at Children’s Medical Center of Dayton because, Wright says, a similar hospital in Columbus said Kailey would not be  a candidate for a heart transplant but medical providers in Dayton disagreed with that negative assessment.
Wright says survivors of similar heart defects have lived into their 20s and medical advances have made the difference.
After all she has been through, Wright remains optimistic and grateful for every day she has with her daughter.
“Congenital Heart Defects don’t have to be a death sentence. If we had listened to the doctors and pulled the plug, Kailey wouldn’t be here today. We know her life is going to be short but none of us know when we’re going to die. I know I sound as if I could handle it but if anything happened to her, I’d fall apart,” she added.

Kailey Wright was born with gravely serious heart defects that continually threaten her life. However, she has exemplified the triumph of determination over doctors’ interpretation of medical facts again and again throughout her young life.

A diagram of Hypoplastic Left Heart Syndrome

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