Child’s heart still beats against all odds

By Mike Ford, The Delphos Herald
Published:  Friday, February 15, 2008 (6 months, 3 weeks 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

19 Reader Responses to “Child’s heart still beats against all odds”

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  1. #1 — Added 6 months, 3 weeks ago

    Hello from Little Hearts, Inc. Thank you for sharing Kailey’s story with your readers. Just in our organization alone, we have over 350 HLHS survivors with our oldest being 22 years old whose photo can be seen in the slideshow of our PICNIC page of www.littlehearts.org. There are many other survivors in their twenties - it was around 1980 when Dr. Norwood “invented” these palliative surgeries for these kids. Unfortunately, there was no surgical procedure to help these kids prior to this time.

    Thank you again for bringing awareness to the #1 birth defect and sharing one of our member’s stories!

    Posted on February 15, 2008 at 7:31 pm by Lenore Cameron

  2. #2 — Added 6 months, 3 weeks ago

    I am very proud of my grand daughter. she has come a long way.
    believe me she is as mean as a snake. This is want makes her so very

    Posted on February 15, 2008 at 9:44 pm by dottie waldrop

  3. #3 — Added 6 months, 3 weeks ago

    I am very proud of my grand daughter she is as mean as a snake
    believe me she is so precious and I love to talk to her and fight with her.
    she is a fighter.

    Posted on February 15, 2008 at 9:45 pm by dottie waldrop

  4. #4 — Added 6 months, 3 weeks ago

    Kailey,
    You are very special to us and We LOVE YOU very much.
    Aunt Stephanie, Uncle Tony, Savannah,Rebekah,Joshua.

    Posted on February 15, 2008 at 9:56 pm by Stephanie Waldrop

  5. #5 — Added 6 months, 3 weeks ago

    Happy Birthday KK You go girl!!!!!!! We miss seeing you. It was always great having you stop by the office when I worked at Deer Creek.
    Love you, Scott, Kim & Eli

    Posted on February 15, 2008 at 9:57 pm by Kim HInes :)

  6. #6 — Added 6 months, 3 weeks ago

    Fyi, I was born with aortic stenosis. After 33 years my aortic valve simply gave out on me. As a result of calcification and stenosis I ended up having double heart valve replacement. Needless to say, that was a toughie.

    Doing much better now that my valves no longer have aortic stenosis.

    Cheers,

    Adam

    Posted on February 15, 2008 at 10:43 pm by Adam Pick

  7. #7 — Added 6 months, 3 weeks ago

    Thank you for sharing Kailey’s story Laura. She is beautiful and a wonderful inspiration. With prayers for everyone’s continued great health, Valerie Guerin, Mom to Cora (2 1/2), diagnosed HLHS 20 weeks in utero and Stephen (7 months)

    Posted on February 16, 2008 at 2:47 pm by Valerie Guerin

  8. #8 — Added 6 months, 3 weeks ago

    we too have 5 year old HLHS daughter, undergone the 3 surgeries, and has no spleen. They are special children and God has a plan for them,.

    Posted on February 16, 2008 at 4:22 pm by Patsy Berry

  9. #9 — Added 6 months, 3 weeks ago

    what an amazing story. You are so brave and Kailey is so courageous. She is a true survivor in every sense of the word. God has special plans for her. We too have a miracle baby (Brianna, TAPVR and ECMO survivor). I thought she endured it all until I read Kailey’s story. I hope she continues to beat the odds. God bless her. She is lucky to have parents like youand you are blessed to have her. I will think of her after reading this story.

    Jeannine

    Posted on February 16, 2008 at 11:09 pm by Jeannine Usher

  10. #10 — Added 6 months, 3 weeks ago

    SHE IS A MIRACLE! You are blessed with such a beautiful girl.. Her smile is so big and her eyes are so bright.. Thank God she had you to help her fight and survive.. She’s a testament to God.. My little Princess also has HLHS, she had a stroke at 3 days old during her Norwood.. But by the grace of God lives completely normal with the exception of a speech delay.. Thank you for allowing Little Hearts to share her story with all of us.. She is wonderful and she’s so blessed to have you..

    Posted on February 17, 2008 at 1:14 pm by Angelina Krell

  11. #11 — Added 6 months, 3 weeks ago

    What an inspiring article. Kudos to Mr. Ford and wishes for continued heart health for Kailey! It took much courage for the Mom to tell her story. Know that it helps many others across the country!

    Posted on February 17, 2008 at 6:43 pm by christine

  12. #12 — Added 6 months, 3 weeks ago

    Happy Birthday Kailey!! You are an amazing young lady with so much strength and perseverance. You rock!!

    We are also a Little Hearts family - thank God for Little Hearts!! We are also an NDSS family. Our daughter is an amazing 4 yr old and is also a big sister to her 2 yr old brother.

    Thanks for sharing your “heart” story. It was beautifully written.

    Enjoy every day!!
    The Meier Family

    Posted on February 18, 2008 at 10:45 am by Caroline Meier

  13. #13 — Added 6 months, 3 weeks ago

    Laura, I am so glad that you were given the opportunity to share Kailey’s story, it’s a wonderful one. She is a miracle and so strong. I miss you both. Love you Kailey,

    Heather

    Posted on February 18, 2008 at 10:47 am by Heather Etter

  14. #14 — Added 6 months, 2 weeks ago

    My ex step-son, Josh, will be 9 in May. He has HLHS. Each one of these children is a miracle. Thank you for sharing your story! May God continue to bless you with His grace and mercy! Praise Jesus!

    www.carepages.com
    JoshuaThomasSpencer

    Posted on February 19, 2008 at 6:55 pm by Lisa Spencer

  15. #15 — Added 6 months, 2 weeks ago

    what a wonderful story i just read, what a beautiful young lady,a very special angel,may god continually bless you. gail

    Posted on February 20, 2008 at 5:03 pm by gail taylor

  16. #16 — Added 5 months, 1 week ago

    May god bless you Kailey, and thank you mom for sharing your story, I have a little granddaughter who was born 12-13-07 who has Hlhs and she is still here with us today. She came home for the first time 2 weeks ago after 14 weeks in the hosipital, we are looking to have the Glen in 4 to 6 weeks from now. Rebecca has a feeding tube and she is home on oxygen but all in all she is doing well. May God bless you and your family each and every day. Thank you for your hope and sharing your story it help People new like me.
    Debra Rasbury

    Posted on April 1, 2008 at 4:52 pm by Debra Rasbury

  17. #17 — Added 4 months, 4 weeks ago

    My son, Nicholas, is a hlhs survivor, who is now 20 years old and has received his driver’s permit and will get his driver’s license and always been
    active. He presently only takes baby aspirin and still is followed at
    Boston Children’s Hospital where he had his second and third operations while his first was at CHOP operated by Bill Norwood, M.D.,Ph.D, who
    innovated the stage 1 procedure.

    I found the story of Kailey truly amazing and I’m extremely elatedthat the her parents fought for her and she is proof that with love and caring parents as well as the physicians who steadfastly held to the hippocratic oath that
    they sworned to give the utmost care to their patients. God bless
    us as loving parents do and for the health-care personnel who stood by
    Kailey.

    Please see the video of Byran Rotlein, a 31 yr.old veterinarin from Florida,
    his story is in Smarth Health, March, 2008; on 19 min., and 42 seconds,
    who has the same heart diagnosis plus other congenital heart anomalies
    as Kailey and my son.

    Posted on April 11, 2008 at 2:16 pm by Toni Palladino

  18. #18 — Added 4 months, 2 weeks ago

    What a wonderful and inspiring story. Thank you “mom” for sharing it. And God bless you Kailey! may you continue to astound us all!

    Posted on April 22, 2008 at 7:19 pm by Sandra Kohorst Dennis

  19. #19 — Added 3 months ago

    Just wanted to say thank you for your inspiring story. I to had a son with HLHS. He underwent the first surgery at 7 days old with great success, but unfortunately passed on suddenly just before he turned 9 months and two weeks before his scheduled second surgery. I pray that God keeps doing his miracles with Kailey, as all things happen for a reason.

    Posted on June 6, 2008 at 4:59 pm by Colleen Jury