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Family fights for heart transplant for 7 month old, Daniel

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  • Family fights for heart transplant for 7 month old, Daniel

    Family plans walk to Houston for child's heart

    By James Ramage, [email protected]

    Looking at 7-month-old Daniel Harlan of Bossier City, blissfully lying on a
    pillow and drinking his bottle of formula Friday afternoon, it's clear he's the
    only one who doesn't know he should be dead by now.

    A cardiologist told his mother, 33-year-old Tammy Harlan, that his heart is a
    ticking time bomb and that he shouldn't have lived this long. Daniel was born
    with infantile hypertrophic cardiomyopathy -- an enlargement of his heart that
    causes major and lethal blockage in one of its chambers, doctors told Harlan.

    Medical experts in New Orleans says he at least requires open-heart surgery
    -- a procedure that's never been done on an infant -- and more likely a heart
    transplant, Harlan said. They recommend Daniel have the work done at Texas
    Children's Hospital in Houston.

    The problem: Medicaid has said it won't cover either, which would cost as
    much as $340,000 for both procedures, Harlan said.

    Her family's response is to put one foot in front of the other ... for 243
    miles. They want to walk from Cypress Baptist Church in Benton to the front
    steps of Texas Children's.

    "Talking to Medicaid, they don't understand," Harlan said. "I'd walk to the
    ends of the earth for Daniel, for my family."

    Harlan, three other sons and daughters, some cousins, other members of her
    extended family and several residents will start the 3' 1/2 -week trek to
    Houston on Sunday. Harlan's husband, Robert Harlan Jr., won't make the walk
    because he must take Daniel to New Orleans on a bus to get tissue-matching work
    done Wednesday.

    "We want to get as many people as we can to call Medicaid to tell them they
    're wrong for how they're handling this," Tammy Harlan said.

    On May 27, she said she saw Medicaid's approval of a prior request for a
    procedure at Texas Children's. Then Medicaid denied the request in a letter
    earlier this week because it wouldn't be done in Louisiana, she added.

    Tammy Harlan said Darlene White, Medicaid's prior authorization department
    director, called her several times Friday afternoon to inform her that White's
    department never received a request for a procedure.

    "It's finger-pointing now. But as long as they fix (Daniel), I don't care who
    messed up."

    The scene in the living room of the Harlans' home on San Antone Drive
    appeared typical for a sunny June afternoon. Daniel laid on a throw pillow and
    occasionally kicked his legs as he looked around with wide brown eyes. His
    mother sat on her sofa and fielded telephone calls from the media, Medicaid and
    various supporters as her other children and friends entered, asked questions
    and left.

    Daniel's sister Sherry Harlan and his cousin Janie Scroggins sat next to
    Tammy Harlan and watched MTV with the sound muted and talked quietly.

    Janie, who arrived from Missouri to lend her support, is excited about the
    prospects of the "hot and tiring, but fun" walk.

    "We're going up against big people," the 10-year-old said. "I think it's
    wrong that they're not going to save a baby's life."

    Sherry, 15, agreed.

    "I think it's good we're going to walk for him. Walking for my little
    brother, it's worth it."

    The Harlans are looking for donations for the trek and the procedures.

    A local Domino's Pizza store has agreed to feed them along the way; and
    Creative Advertising Products of Shreveport is making T-shirts for Daniel's
    cause and donating the first 50 to those who already have committed to walking,
    Tammy Harlan said. They're selling the rest for $10 each and giving the proceeds
    to Daniel, she added.

    Tammy Harlan also is looking for someone to lend them a recreational vehicle
    in which the children can sleep.

    "When I get there, to Houston," she added, "I'm falling down."

    GRAPHIC: Robert Harlan (left) will take his son, 7-month-old Daniel, to New
    Orleans on Wednesday to get tissue-matching work done. Jessica Leigh, The Times

  • #2
    Medicaid to cover infant's heart surgeries

    June 9, 2005

    Tammy Harlan (left) and her sister, Angelique Hancock, wave to drivers as they walk west on state Highway 5 in Logansport on Wednesday afternoon to raise money for Harlan's 7-month-old son, Daniel, who has a heart condition. Harlan planned to walk to Houston from her starting point at Cypress Baptist Church in Benton but decided to stop at the Louisiana-Texas line Wednesday after hearing that Medicaid reversed their decision and will now cover Daniel's surgeries. (Jessica Leigh/The Times)

    By James Ramage, [email protected]

    LOGANSPORT -- Her ankles felt broken. Her feet had blisters everywhere.

    And Tammy Harlan of Bossier City couldn't properly express how badly her calves were hurting after walking from Benton to Logansport, more than 40 miles, this week.

    But as things have turned out, it was all worth it.

    Medicaid agreed Wednesday to cover vital heart procedures for her 7-month-old son, Daniel Harlan, the state Department of Health and Hospitals announced. Daniel requires heart surgery and, most likely, a heart transplant to repair the life-threatening blockage in his heart, his mother said.

    Upon hearing the news, Harlan said she collapsed into sobs while walking on Day 4 of her 243-mile trek to Texas Children's Hospital in Houston, where her son's procedures now are to be performed.

    "I just cried," the sunburned 33-year-old later said while standing in 93-degree heat in a patch of shade alongside state Highway 5 near a lumber mill just north of Logansport.

    "There was nothing else I could do," she said of her journey to make people aware of her son's plight and let them know about Medicaid's actions.

    Harlan said Medicaid initially told her it would cover the procedures. Several days later, Medicaid said it wouldn't pay because the procedures couldn't be done in Louisiana.

    DHH spokesman Bob Johannessen maintained that Medicaid never approved nor denied coverage for the procedures.

    Harlan adamantly repeated that she saw the approval on a hospital computer screen and the denial on a sheet of paper at Texas Children's.

    Medicaid now will cover both procedures, if necessary, at the Houston hospital, Johannessen said. They can take place as soon as they're scheduled, he added.

    Harlan, wearing a yellow and black T-shirt she had specially designed for Daniel's cause, said she would finish her walk by crossing into Texas before nightfall Wednesday then take home the van that carried relatives, supporters and supplies.

    Early this morning, she plans to drive to New Orleans, where her husband, Robert Harlan Jr., took Daniel to get tissue-matching work done.

    Harlan and sister Angelique Hancock, who occasionally walked with her, both were relieved not to have to walk all of the way to Texas Children's.

    "Having made it to Houston means Medicaid still hadn't changed their minds," Hancock said. "It would have been bad news."

    Along the journey -- which started Sunday morning -- cars have honked their support, Tammy Harlan said. One driver even hit her with a rolled-up $20 bill, she added.

    State troopers asked that Daniel's siblings and cousins stay in the van because it was too dangerous for them to be on the two-lane Highway 5, Tammy Harlan said.

    Jason Hancock, one of Daniel's cousins, said he'd enjoyed skateboarding during the walk and was sorry it wouldn't continue past the Texas border.

    But the 12-year-old added that he likes what it achieved. "I'm excited for my little cousin. It was all good."

    Tammy Harlan said, "This walk wasn't just for Daniel, but was for everybody who's had problems with Medicaid and for everyone who had two jobs and couldn't walk with us."
    [Ramage, James]

    Comment


    • #3
      UPDATE: I spoke to Tammy I have gotten her in touch with Mayo and Dr. Dearani. The Mayo has done myectomies on little ones as young as 2 mo old. They are on the way to getting the case evaluated and hopefully this little one will get the care he needs.

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Right on Lisa!!! As a new father to a beautiful 11 month old girl, I know I would walk to the ends of the earth to help my child.

        Paul
        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

        Comment

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