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.


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.


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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