After fighting for her daughter's life, mom fears GOP health care bill

Story highlights

  • Charlie Wood was born more than three months early and has lingering health issues
  • Like 40% of US children, the 5-year-old relies on Medicaid for health care

(CNN)She's a 35-pound bundle of blonde cuteness with hard-working parents.

"We're not deadbeats," said Rebecca Wood, 38, who lives with her husband and daughter in Charlottesville, Virginia.
    Wood has a message for Republican lawmakers in Washington who have proposed dramatic cuts to Medicaid: Families like hers are deserving and need help, not slashed funding.
    Wood's daughter, Charlie, was born more than three months early, weighing just one pound and 12 ounces. While she's now 5 years old and doing well, she suffers from complications of her extreme prematurity. She still gets most of her calories through a feeding tube in her stomach.
    Wood and her husband have expensive medical bills as a result of these complications.
    With the help of Medicaid, Charlie has made great strides. Forty percent of US children are on Medicaid.
    After five grueling years, her parents now have confidence that she will realize their dream for her: to grow up to become an independent adult.
    But if the Republican health care plans succeed, they worry that dream could die.
    "There are these men, just far away from everything, snatching it out from under her," she said.

    Changing Congress

    Arriving early for an appointment with her congressman in May, Rebecca Wood paced the streets of Capitol Hill to calm her nerves.
    A few weeks before, on May 4, Virginia Republican Tom Garrett had voted for the American Health Care Act, a plan Wood thinks could endanger her daughter.
    As she walked, Wood tried to gather the courage to confront Garrett and a yard sign along her path gave her confidence.
    It was a quote from the anthropologist Margaret Mead: "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
    Now the stay-at-home mom was ready to tell her story to her congressman.

    Charlie's story

    When Wood was six months pregnant, she started to see spots. It was the onset of preeclampsia, a disease that can kill mother and child.
    Wood's blood pressure soared causing doctors at Inova Fairfax Hospital in Falls Church, Virginia, to deliver Charlie at 26 weeks -- 14 weeks early -- to save both of their lives.
    After the delivery, Wood went straight to the intensive care unit, her kidneys and liver suffering terribly. Deluded by her disease and the drugs to treat it, she tried to unplug her monitors so she could get to Charlie.
    Wood wasn't healthy enough to see her daughter for another two days.
    Her husband wheeled her to the neonatal intensive care unit where she looked down into the isolette at her 1-pound, 8-ounce baby and promptly burst into tears.
    Charlie Wood soon after her birth
    "I was afraid she wasn't going to survive. It terrified me that this was it," she said.
    "I watched you fight and I cheered you on," she would write later in her blog. "On your difficult days, I prayed and begged. Sometimes you would forget to breathe. I gently nudged you as a reminder."
    Charlie was discharged after three months in the hospital, though her growth and development lagged behind other babies. She still suffers from delays in speech and fine motor development and is vulnerable to infections, like pneumonia.
    Her mother, however, was undaunted.
    "I told myself in my head that whatever she could do, we would use whatever her ability is to give her life meaning. If she could hear, then we'd play music for her. If she could only see then we'd take her to look at art and look at the outdoors," she said.
    Wood, who had been a social worker, stayed home to focus on Charlie. She took her to doctors' appointments as well as physical, speech, occupational, feeding, and music therapy sessions.
    It worked.
    By Charlie's first birthday, she could sit up by herself. At 20 months, she took her first steps. Today, she runs around the playground like any child her age. She'll start kindergarten in the fall, a milestone that makes her mother beam.
    "She's amazing. She's an incredible kid, but there's a lot of work that went into getting her to where she is," she said.

    Mrs. Wood goes to Washington

    As she climbed the steps to Garrett's office, Wood said she felt like the character from the iconic movie, "Mr. Smith Goes to Washington," about the reformer who tries to change the system.
    Wood set her cell phone on the couch and obtained permission from Garrett's aide to record the conversation.
    The very first thing Garrett did was to suggest that Wood was confused about the bill.
    "I'm afraid that there's been some hyperbolic mischaracterization of what the reality on the ground is," Garrett said. "It's unfair to you. It's creating fear and anxiety where it need not exist."
    Wood assured her congressman she wasn't confused or under anyone's influence. She'd read the GOP bill thoroughly.
    She explained that her family has health insurance through her husband's job, but they're still responsible for deductibles, copayments, and other expenses -- which add up to more than $12,000 a year.
    Medicaid pays for those extra costs.
    Garrett told Wood not to worry, saying "they're not getting rid of Medicaid."
    But the House bill, which Garrett voted for, would reduce federal spending on Medicaid by nearly a quarter by 2026 compared to current law, according to a Congressional Budget Office estimate.
    Some 14 million fewer people would be covered by the program at that time.
    Under the GOP Senate plan, which has yet to be put to a vote, some 15 million fewer Americans would be covered by Medicaid in 2026.
    Wood is afraid Charlie will be one of them.
    Garrett told CNN that care doesn't have to suffer when funding gets slashed.
    "The reality is that sometimes you can move money and still get good outcomes," he said.
    "So if you had a daughter like Charlie, would you have voted to pass [the GOP plan]?" Wood asked her congressman at their meeting in May.
    "Absolutely," he answered.
    Then if the Republican bill is so great, Wood asked him, why are so many health advocacy groups, such as the March of Dimes, against it?
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    "Some experts" support the plan, Garrett answered.
    "Who?" Wood asked. "Tell me."
    "Some have," Garrett answered.
    Wood didn't get her answer, but she let it go. Their time was up.
    "I know we're banging at each other, but you're doing exactly what you ought to be doing as a mom," Garrett told her.
    "I'm sure you're a lovely person. I just disagree with you on this bill," Wood responded.
    Rebecca Wood with Virginia Rep. Tom Garrett, a Republican.
    Before they parted ways, Wood took a photo with her congressman. She says if she looks unhappy in the picture, it's because she was.
    "I don't think there are words that express how angry I am that somebody could vote for something that would hurt the people he's supposed to represent," she said.