Woman struggles to care for sick daughter

August 11, 2005

Ashanti Washington's bedroom is a clear indicator of how she isn't like most 8-year-old girls.

While there is a barnyard full of vibrantly colored stuffed animals for her to play with, there also are stacks of formula she consumes as well as rolls of medical tape and piles of diapers she must wear. There is a hospital-issue bed in a corner to keep her at a 30-degree angle so she doesn't aspirate and an oxygen machine behind it.

Ashanti also doesn't live like most 8-year-old girls.

She takes 16 medications every day. She's been eating through the jejunum tube (or J-tube) she's worn for more than a year that leads straight to her small intestine. Her left arm is paralyzed except for involuntary movements.

Ashanti has 15 percent of the brain capacity her peers have and has regressed to the mental capability of a 3-year-old. She had been a model student and an excellent reader, her mother, Arthena Washington, said. But she no longer can speak and hasn't been to school in two years.

Ashanti has moyamoya disease, marked by a narrowing of major blood vessels leading to her brain, her mother said. According to the National Institute of Neurological Disorders and Stroke in Bethesda, Md., there is no known cause or cure.

As though that weren't enough, she also has sickle cell anemia, asthma, eczema and a blood-clotting disorder.

As a result, Ashanti has suffered through so many strokes and seizures that her health is in a perilous state and her mother has signed a "Do Not Resuscitate" order.

Because of the confluence of illnesses and conditions, Ashanti's physicians told her mother she'd have about two weeks to live " back in October.

Washington, with level eyes, sat in the den of her home in Shreveport's Martin Luther King Jr. neighborhood on a recent midsummer afternoon and spoke with a weary yet unwavering voice.

"I'm told she'll pass in her sleep. I'm going to take care of my child until the Lord calls her home, if it takes 50 years."

But her efforts to do this have been complicated by Medicaid and the state's apparent desire to place her daughter in a nursing home. Washington blames the state for cutting parts of the in-home services her daughter receives such as the number of days a home health care worker comes by to change the dressings in the tender area around Ashanti's feeding tube.

Louisiana also didn't want to approve the hospital bed she sleeps on or the oxygen machine, her mother said.

Washington tells the story of how she tried to get a $7,000 voice communication box a speech therapist recommended for Ashanti when she started losing her voice. Medicaid turned it down then finally approved it more than a year later, Washington said. By then, however, it was too late. Ashanti's voice was already gone.

The box now sits in Washington's living room, cluttered among cans of formula, clothes and other medical supplies.

"You've got to fight the state with every tooth in your mouth," she said. "Why are you fighting the people who really need the services?"

The state says it's not. The home health agency National Homecare works with physicians at LSU Health Sciences Center in Shreveport to provide Ashanti's care, said Bob Johannessen, spokesman for the state Department of Health and Hospitals.

For its part, the Health Insurance Portability and Accountability Act prevents National Homecare from acknowledging Ashanti as one of its patients, let alone discussing her condition, according to Nicole Spring, director of pediatric services.

Ashanti's physicians at LSUHSC all referred comments about her to DHH.

Johannessen said that the treatment of Ashanti's diseases has been appropriate and that any worsening of her condition hasn't been due to the lack of therapies she's received, but to the natural progression of the diseases she has.

"It would not be unusual for a service to be requested for approval and then not approved the first time," he said. "Physicians and home care workers decided a lot of those services that have been requested would not make a difference in her life because her condition is terminal."

Moving Ashanti to a nursing home would not be the state's decision, but one by Ashanti's mother in conjunction with her physicians, Johannessen said. Physicians and other medical professionals involved with her care would decide whether additional visits by home care workers would help Ashanti, he added.

But Washington said she's only been able to watch her daughter's condition worsen and her services dwindle.

"They said we didn't need a nurse checking blood pressure and vitals every day for a DNR patient."

In the den, Ashanti lay on the floor while National Homecare's Melanie Hanna straddled her and applied bandages to her J-tube. "Dr. Phil" played on the TV as Ashanti occasionally squirmed and arched her neck to look around.

When Hanna finished, Ashanti stood and grinned. She's often depressed because she can't run or play like other children, her mom said.

Ashanti's first stroke occurred in January 2001, Washington said. The girl has gone through long periods when she's received a blood transfusion every two weeks.

Ashanti also had surgery to reroute an artery in her brain in July 2002. It helped, but the relative calm was brief, Washington said.

"I live my life every day, every minute by what's in front of me, by what she's doing. She'll have a seizure or something in the blink of an eye."

Washington's family and friends pitch in to help all the time, she said, as has her church and the Sickle Cell Anemia Foundation.

The constant stress and dedication has been particularly hard on Washington, who sometimes feels she has the weight of the world on her shoulders.

But Washington often stops to remember the miracle Ashanti has been to her, living as long as she has with her diseases and even living at all.

"I was told I couldn't have kids. She's my miracle baby. We're living on borrowed time just trying to keep her happy."

ASHANTI'S AILMENTS
Moyamoya disease: a rare progressive disorder characterized by the narrowing of major blood vessels in the brain and the formation of abnormal moyamoya vessels. Moyamoya is Japanese for "cloud of smoke" and refers to the vessels' appearance. Progressive deterioration of cognitive function is seen in the majority of individuals with moyamoya disease. Death usually results from intracerebral hemorrhage.

Sickle cell anemia: an inherited blood disorder that turns normal, round blood cells into misshaped cells that look like sickles or crescent moons. These sickled cells can get stuck in blood vessels, blocking blood flow and causing severe pain as well as damage to organs, muscles and bones.

Asthma: a disease of the branches of the windpipe (bronchial tubes), which carry air in and out of the lungs. There are several different types of asthma. During normal breathing, the bands of muscle surrounding airways are relaxed and air moves freely. During an asthma episode or "attack," changes in airways stop air from moving freely. The narrowed airways trap stale air (carbon dioxide) in the lungs. As a result, people with asthma feel they cannot get enough air into their lungs. All of these changes make breathing difficult.

Eczema: a skin condition caused by inflammation. Atopic dermatitis is the most common of the many types of eczema. Typically, eczema causes skin to become itchy, red and dry -- even cracked, blistery and leathery. Eczema most frequently appears on the face, wrists, elbows and knees but can show up in other areas, too.

Blood-clotting disorder: Ashanti takes blood thinning medication.

Sources: Healthwise Inc. of Boise, Idaho; National Institute of Neurological Disorders and Stroke in Bethesda, Md.; The Cleveland Clinic Department of Pulmonary, Allergy and Critical Care Medicine in Ohio.
By James Ramage

Jenny,

Ashanti's mom Arthena (or Michelle as she likes to be called) has posted on this board.  She does have an email address listed under the "Members" section.  I personally think you might just be one of the best people to talk with her as your stories sound similar.  I'm copying a couple of her posts below but her member name is "arthena_washington and Ashanti has already had 2 surgeries it sounds like.  Hope this helps.

Lisa

LisaH -- Thank you for the contact information.  I was able to find Michelle's email address, and get an email to her. 

I also sent a letter to the paper's editor (I found the Shreveport Times's website).  Here's what I wrote:

The article, “Woman Struggles to Care for Sick Daughter,” from August 11, 2005, broke my heart.   The state and healthcare system are miserably failing this family.  The disease that Ashanti Washington suffers from, Moyamoya disease, does not have to be terminal, as State Spokesman Bob Johanessen claimed.

Mr. Johanessen was correct in his assertion that rehabilitative services will ultimately do little to alter Ashanti’s medical outcome; however, receiving the appropriate medical treatment from a specialist in Moyamoya disease could make an extraordinary difference.

My two-year-old daughter, Daphne, also has Moyamoya disease, and suffered two strokes before her diagnosis.  Like Ashanti's mother, we were also told that Daphne would not live beyond two weeks.

However, this March, Daphne had a two-part neurosurgery that rerouted blood to her brain, allowing it to bypass the arteries that were occluded.  Today, she has regained 80% of the skills she lost after her strokes, and her chance of a third stroke has been dramatically reduced.

The problem with having a rare illness, like Moyamoya disease, is that very few doctors are truly knowledgeable about it.  Ashanti’s life may look a lot different if she were able to see one of the handful of neurosurgeons in the United States with significant Moyamoya experience.

My husband and I were fortunate enough to be able to take our daughter across the country for treatment, and to have insurance willing to cover the expensive operation.  How tragic that those who must depend on help from the government have such a dramatically different experience.  How tragic that the state is sending the message that those who have Moyamoya disease have a hopelessly fatal condition.

Jenny...I agree with Jill...you did a great job writing to the editor or whoever !!!!  Too many out there that were told there is no hope.  And somehow we need to continue to get the message out however we can.

hugs,  Carol

Jenny,

Your response to the article was superb!  I hope your letter touches the hearts of the paper's editor, medical insurance, healthcare and state officials as it did mine.   

Awesome job!

Take care,
Shan