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Health care in the United States is a cruel place to have a serious health issue and few resources. This is what happened to a little girl during George Bush's Administration and what will continue to happen with a John McCain Administration. Barack Obama's plan isn't enough, but it's a lot better than the status quo. It's a start toward civilizing our Uncivilized Health Care System.

"Maya" (not her real name) is a little girl in South Florida, who's family situation is very complex, which has left her with no insurance, a cleft palate and parents who can't solve the problem.

She is six years old. Her seventh birthday is coming up. She still has a cleft palate.

Here's her story of how uncivilized our health care system is.

Maya was born with a complete, unilateral cleft palate which includes a cleft lip. The roof of her mouth was open from her lip all the way back to uvula.

Her mother was in the process of divorcing her husband. She was living apart from him with their 2 children when she bacame pregnant. They never do get divorced.

No Medicaid

The mother is young, unemployed and has little education. She had no insurance at the time the child was born. Medicaid picked up the tab for her birth in another state, but Medicaid wouldn't enroll the baby because the mother was still married. They said the father was responsible for the medical care of this baby.  

Mom moved back to Florida. Medicaid in Florida said the same thing.  Florida wasn't going to enroll the baby in Florida Medicaid.

Early Treatment

Somehow, the mother got the money together to get a retainer that cost about $200 and $500 for the doctor visits for the retainer's prescription and fitting. No mean feat with no job, 3 kids, no income and bouncing around family and friends for a living situation. Mom had a lot to absorb in caring for her new baby. She was told that the baby should have the surgery before she is 18 months old for the best results. That didn't happen.

No Private Insurance

The baby has a dangerous hole in her head and a retainer that is supposed to help keep things together. Her father is so furious at her mother, that he can't see that the kid that didn't do anything other than get born. He doesn't have health insurance for himself. His employer didn't offer insurance benefits. There was nothing to enroll the baby in.

Finally, husband gets insurance benefits except the cleft palate is excluded as a pre-existing condition and because the child has a birth anomaly, the company's rates are hiked up. His supervisor strongly suggests he drop their insurance coverage; which he does to stay employed.

No SCHIP

The mother attempts to enroll the baby/toddler in Florida's SCHIP program and ran into several problems. First, the freeze, then the story was that the child's father made too much money for SCHIP, but they still can't find affordable private coverage.

Going Bare

The entire family is going bare because of this child's birth anomoly. As soon as a prospective insurer see's this child's medical history, the rates are hiked up beyond what they can pay.

No Credit

There are no sub-prime medical loans. The mother was unemployed and couldn't get credit. No one wanted to co-sign with her.

No Help From Social Services

Children's services wasn't going to take the child away from her mother for medical neglect, because then they would have to pay for the surgery. The county prosecutor wouldn't touch the slam dunk case because it wouldn't have solved anything and would've put the adults in prison and 3 kids in foster care with the state paying the bills.

No Charity Care

Faith based charities were no help. (Their job was done once the child was born.) Miami Children's Hospital had nothing for this family. Joe DiMaggio's Children's Hospital had nothing for this family. Knights of Columbus, ditto.

Time Goes On With No Solution

Meantime, the baby has sailed past the 18 month mark and is now approaching her 3rd birthday. She's happy and developing well, her only problem is the hole in her head and speech problems. She has had several retainers made for her as her head grows. Each visit to the doctor is more distressing because the physician keeps telling the mother that the surgery needs to scheduled. The judgemental attitude of the doctor and his staff makes her feel incredibly guilty because she doesn't have the $20,000 down payment (between the surgeon and hospital) for the surgery. (Please note that the extended family couldn't put together $20k either.) She's been given multiple brochures that didn't apply to her situation to get this surgery paid for. The doctor's staff does nothing to assist the mother in finding funding for the surgery other than hand her brochures. Nothing budges.

until...

The Shriners came through for Maya.

The problem was they had to go to Boston for about a month to have the surgery; which Mom and Grandma did. I think they ended up living in their car part of the time, but they didn't care; Maya was going to get the surgery.

No After Care

The problem with cleft palate repair is that sometimes the repair needs to be redone. The child lives in South Florida, her surgeon is in Boston. The original repair was a "God send" three years ago. Unfortunately, the palate is reopening again. The Shriners will reclose the palate in Boston again, but the mother really doesn't have the resources to relocate to Boston for the month necessary to make that happen.

No Safety Net

Now, it could be said this situation would never have happened if the mother hadn't become pregnant, used birth control or had an abortion. Although her parents were either unemployed or had a low paying job, it could be said the parents didn't do enough fo their child. What does Maya have to do with any of that? She's a child with a cleft palate who lives in the wealthiest nation in the world, but can't get the care she needs.

There is no way treatment like this could be "free", but there must be a way, a mechanism to address the needs of people like Maya. Maya faced  health care rationed solely on her parents' ability to pay for her care. Her prognosis was and is very good, but that wasn't and isn't a consideration under our current system. There is no safety net for Maya. Her situation wasn't an emergency and with the cleft reopening, six years later and she still doesn't qualify as an emergency. The status quo will continue to deny her care. You might be thinking that surely the family could have saved up the $20k by now, except they need about $40k now and  things like broken cars, broken bones, a hurricane that destroyed their home, and a bout of unemployement killed what little they had saved.

No Shame

This is an unconscionable occurance that a John McCain administration would think is acceptable and a Barack Obama administration would find unacceptable. This is a situation made for Obama's proposed National Health Insurance Exchange. There is nothing in the McCain plan that would help this family, the pre-existing condition problem would be eliminated, but there would be nothing to help them find an affordable health care policy. The $5,000 tax credit would go unclaimed.

The difference is clear.

Barack Obama is offering Change We Need, but he's going to need a lot of help down ticket. We need Progressive Reps and Senators to implement the Change We Need.

Originally posted to JDWolverton on Sun Oct 26, 2008 at 11:49 AM PDT.

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Comment Preferences

  •  Tips & Recs for Maya (26+ / 0-)

    She's an adorable child who doesn't seem to realize she's different.

    We are close to getting her the revision surgery.

    If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

    by JDWolverton on Sun Oct 26, 2008 at 11:50:58 AM PDT

    •  Change Your Title (1+ / 0-)
      Recommended by:
      JDWolverton

      Make this a call for help from the Kos Community..

      A Little Girl Needs Our Help, something along that line..

      and ask for someone to help set up a fund for contributions...

      •  There are many Maya's. (1+ / 0-)
        Recommended by:
        Hens Teeth

        What needs to happen is a way to get Mom and daughter to Boston for the surgery when school's out on break.

        If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

        by JDWolverton on Sun Oct 26, 2008 at 12:45:05 PM PDT

        [ Parent ]

    •  Do You Need Any Donations? (0+ / 0-)

      Is there any place I can send a little money to help?

      •  Thanks, for the offer. I think when the family is (1+ / 0-)
        Recommended by:
        RN4MERCY

        able to schedule going to Boston, they will need help in finding accomodations there; which at this point looks like next summer. It will be Mom and daughter this time, because Grandma can't leave the Grandfather this time around.

        It's the planning that's bogging this down. I wrote this diary because it's absurd to have to go to Boston, where there's funding, but no accomodations when there's an able medical community here in South Florida and accomodations, but no funding.

        This is crazy.

        If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

        by JDWolverton on Sun Oct 26, 2008 at 01:06:04 PM PDT

        [ Parent ]

  •  Thanks for posting this.. (10+ / 0-)

    It's a good reminder of what is at stake.

    From the future Mrs Colbert.

    by recruitgal on Sun Oct 26, 2008 at 11:51:16 AM PDT

  •  rec'd (8+ / 0-)

    so shameful.... yet as you say,they have no shame.

    We will end it by telling the truth - forcefully, repeatedly, confidently - and by trusting that the American people will embrace the need for change. 5/6/08

    by Lady Libertine on Sun Oct 26, 2008 at 11:56:55 AM PDT

  •  I see horror stories daily --as a doctor (7+ / 0-)

    I am a physician who went into medicine after my 2 year son was found to have leukemia.  My husband's employer had just changed from traditional insurance to an HMO plan and there was a period of no coverage at all for employees.  That was when our son was diagnosed.  Fortunately, our son was cured after five years of aggressive treatment. This included a relapse and experimental drugs.  

    It also included daily harassing phone calls from the bill collectors. Making payments as we could.  One of us could not work because we had to transport our son often to the hospital an hour away. Crying spells.  Lots of crying. Fear that our son would die.  Then frustration and fear that our credit was ruined or that our son could not get treatment anymore.  Oh--did I leave out divorce?  Of course that occurred too!

    Obama's health care plan is not as extensive as I would like, but he is wise in pursuing this plan of his.  It will likely happen, whereas the universal coverage plan will take more time to be accepted.

    Every day people are straying away from the church and going back to God. - Lenny Bruce

    by medicinewoman on Sun Oct 26, 2008 at 12:06:27 PM PDT

    •  Thanks for sharing. There's so much out there to (3+ / 0-)
      Recommended by:
      mango, jlms qkw, Tennessee Dave

      share.

      I'm glad your son survived.

      I like to hear about the successes.
      thanks, again.

      If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

      by JDWolverton on Sun Oct 26, 2008 at 12:12:38 PM PDT

      [ Parent ]

    •  My daughter had a cleft palate (4+ / 0-)

      and we were fortunate enough to have insurance.  Hers was mild and only involved the inside of her mouth--lip was fine.  Even with a mild one, she regularly choked, turned blue, and had difficulty eating until she had surgery at close to one year.  I can't imagine how hard it must be to have a child with this level of severity and this length of time.  

      There is a charity in Dallas that might be able to help--http://www.ccakids.com/

  •  Rec This Story Up (4+ / 0-)

    Seems like we Kossacks should be able to put together a little Christmas fund for Maya's surgery...

  •  This is shameful! (1+ / 0-)
    Recommended by:
    JDWolverton

    I used to contribute regularly to The Smile Train.
    They go overseas and do cleft palate jobs in poor countries all the time. I'm not absolutely sure but I think they can do the whole surgery for about $2500. They train local doctors to do it.
    Did anyone contact them? Maybe they could pretend Maya was a poor Indian.

    •  I chose "Maya" because I like the name, Part of (0+ / 0-)

      her problem might actually be her race. She's a curly haired, blond, white little girl.

      Mom has contacted a bunch of agencies and the Shriners are willing to do the surgery again, the problem is coming up with the transportation and lodging in Boston. Plus, now that "Maya" is in school. It needs to be done during school vacations. That means over Christmas or next summer, when she will be seven. I don't think it can be arranged for this Christmas, but probably next summer, she'll get it to happen.

      It's a shame that this family has to go something like 1,200 miles for health care.

      If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

      by JDWolverton on Sun Oct 26, 2008 at 12:41:31 PM PDT

      [ Parent ]

  •  If she could get out of Florida, (1+ / 0-)
    Recommended by:
    JDWolverton

    where JEB! and company bankrupted every safety net agency extant, maybe ... could her mom or dad find a job in the Boston area?

    or if the whole family moved to MA would that help?

    One America does the work, another America reaps the reward. One pays the taxes, another gets the tax breaks." John Edwards

    by BlackSheep1 on Sun Oct 26, 2008 at 12:43:01 PM PDT

    •  Well, I think the family wants to stay in FL (1+ / 0-)
      Recommended by:
      SadEagle

      It would be great if the surgery could happen at Joe DiMaggio's, but they live in North Broward and Joe DiMaggio Children's Hospital is in South Broward.

      They are content to go where they have to. The family will do it during a break from school and the Shriners has already agreed to do the surgery for the family.

      If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

      by JDWolverton on Sun Oct 26, 2008 at 12:49:38 PM PDT

      [ Parent ]

  •  Should've gotten divorced. (0+ / 0-)

    It shouldn't take that long to do.  Alternately, the dad should be kicking in.

    You should be ashamed! Stop blogging. Stop blogging right now! - Ivy Frye, assistant to Gov. Palin

    by burrow owl on Sun Oct 26, 2008 at 12:46:54 PM PDT

    •  They patched things up. He has all he can do to (1+ / 0-)
      Recommended by:
      Hens Teeth

      keep a roof over their heads for a family of five. She still doesn't work. Then again, she has little education and their kids are young. By the time she pays for after school care for 3 kids, gas and other work expenses; she would clear less than $40 per week.

      If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

      by JDWolverton on Sun Oct 26, 2008 at 12:51:52 PM PDT

      [ Parent ]

      •  If the SCHIP freeze is over in FL, why can't they (0+ / 0-)

        access that?  If their health insurance is very expensive due to pre-existing condition, they should be able to get into KidCare.  

        You should be ashamed! Stop blogging. Stop blogging right now! - Ivy Frye, assistant to Gov. Palin

        by burrow owl on Sun Oct 26, 2008 at 01:00:55 PM PDT

        [ Parent ]

        •  Dad got a pay raise & they don't qualify for (0+ / 0-)

          SCHIP. The cleft palate is a preexisting condition and won't be covered any private or group policy they get....if they could get one.

          If a nation expects to be ignorant and free, in a state of civilization, it expects what never has and never will be. Thomas Jefferson

          by JDWolverton on Sun Oct 26, 2008 at 01:09:58 PM PDT

          [ Parent ]

  •  I Get It That There Are Lots of Maya's But (1+ / 0-)
    Recommended by:
    JDWolverton

    reading your diary hurt my heart. It is criminal,
    the callousness of conservatives since the early
    1980's when Reagan took office. Their appalling
    attitude of "I got mine, fend for yourself."

    Thanks for your piece.

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