Monday, February 19, 2007

Foster care alumna provides foster care for special needs children

Three and thriving
A couple with guts adopt child with heart-stopping problems

Carlsonbee, Ken. Modesto Bee, Feb. 18, 2007.

Hevanne Brown of Manteca started crawling — make that, scooting — months after his first birthday, and didn't walk until he was 2½ years old.

That's not bad for a child born with half his heart underdeveloped. Now, his adoptive parents have a hard time keeping up with him.

"He likes jumping off things; he is a daredevil," said Henrietta Brown, his mother. "He's like a normal 3-year-old. It's easy to forget he has a heart condition."

Henrietta Brown, who was abandoned by her parents and raised by a grandparent in Oakland, has provided foster care for several "special needs" children over the years.

Some children with severe illnesses or mental disabilities are turned over to social services agencies by parents who have drug addictions or are unable to care for them.

Brown considers it a challenge to care for these children and knew she wanted to adopt Hevanne as soon as she saw him.

"We know everyone can't do it," she said. "It is a calling. I don't want them to go to any home where they will be abused. There are a lot of sick, sick babies and they just need some love."

Hevanne was born with a severe deformity called hypoplastic left heart syndrome. The main pumping chamber of his heart failed to develop in the womb and, after his birth, was unable to send blood through his 8-pound body.

His home for the first year of life was Children's Hospital & Research Center Oakland, where he underwent four open-heart surgeries.

His homeless birth mother gave him up for adoption when he was four months old.

Babies with this deformity soon die if not for surgeries that offer a 70-percent chance of surviving at least five years, according to medical literature.

The trick to saving Hevanne's life was adapting his vascular system to work without the left pumping chamber, said Dr. Ziad Saba, the hospital's cardiology director

First, surgeons made a connection between his aorta and pulmonary artery, so the smaller right ventricle, which pumps blood to the lungs, took over the work of sending blood to his body and lungs.

In a second surgery, the veins that drain blood from the head and neck were connected to his lungs. That way, the right chamber of Hevanne's heart could work solely on pumping blood through his body.

In another surgery, veins coming from the lower body can be connected to his lungs, but doctors will wait two years before deciding if Hevanne is right for that.

Like other patients, Hevanne may need a transplant.

His prognosis is worse than some, because he also required surgery to replace a leaky heart valve, Saba said. He is given blood thinners to prevent clots.

Hevanne was a favorite of the hospital staff, often spending time at the nursing station on his floor, and Saba obviously enjoys seeing the boy on follow-up visits.

"Every time I see him in the clinic, it is very uplifting," he said last week. "He is intelligent and runs up and gives me a hug. People find he is pretty good at getting his way."

Henrietta Brown and her husband, John, heard about Hevanne from a friend of Henrietta's who is a Solano County social worker.

The first time they saw him in the hospital in 2005, they hit it off, and the Browns were impressed with his clever streak.

"They wouldn't let him drink water, because they wanted him to leave room for food," John Brown recalled. Hevanne was given water through a tube but was determined to drink.

"He knew if his pacifier was dirty they would wash it off," John said. "He would throw the pacifier on the floor, and when the nurses washed it, would suck water off the pacifier."

She lets him just be a kid
The parents brought him home in August 2005, and within four days he had a crisis due to fluid in his lungs. He was returned to the hospital for a month.

Although some parents might be overly protective of a child who's had four open-heart surgeries, Henrietta gives Hevanne the run of their Manteca home while keeping a watchful eye.
Because he is on blood thinners, a bruise can quickly develop into an emergency. She once rushed him to a hospital after he bumped his head in the tub, causing rapid swelling over his left eye.

Still, the parents let him climb on furniture and ride his rocking horse whenever he wants.

Because of his heart condition, he can tire easily but is OK with everyday activities.

The doctors have stressed that the little boy needs to put on weight, so he's free to eat high-carb foods such as french fries, potato chips and bread sticks. Hevanne weighs 21 pounds, while other boys his age are close to 30 pounds.

He was taken off a feeding tube six months ago, after he kept pulling it out.

Hevanne is behind his age group in learning to speak, though he is very sociable. He repeats any word spoken to him and runs to greet visitors.

His favorite toys are Elmo chicken and the rocking horse.

"I just let him be a kid," his mother said. "I am just an instrument in the little puzzle."

As a young adult, Henrietta Brown worked as a medical assistant and behavioral health technician in Solano County, though her real calling was as a foster parent.

"I took the troubled ones," she said, referring to children suffering from physical disabilities or the effects of fetal alcohol syndrome.

Her toughest case was Amontay, who was placed in her Fairfield home at age 2.

Born more than three months premature, he had spent 18 months in a hospital intensive care unit. He had cerebral palsy, a lung disorder and mental disabilities, was on oxygen 24 hours a day, and wasn't expected to live to age 3, she said.

She quit her job to care for him, getting help from 25 health workers who came to her home.

To everyone's surprise, his condition improved, she said, and before long she believed she could teach him to eat on his own.

Amontay had spent days in front of a television at a previous home, so she decided to use TV as a motivator, she said.

"He loved "Sesame Street." If he took a bite of food, I would turn the TV on," she said.

After he learned to eat, it was time to get on his feet.

She stood him in the middle of the floor, facing the television, and turned off the TV if he went down to his knees. "He was almost five when he started walking," she said.

Brown adopted Amontay in 2001. Now 12, he attends a day school and reads at a third-grade level, she said.

Hevanne never crawled but scooted across the floor on his rump. He also needed coaxing to walk. Henrietta has two grown daughters and a grandson, Josiah. When the grandson came to visit, they stood Hevanne in the living room and he would try to follow Josiah.

These days, a speech therapist comes to the home to teach Hevanne colors, read to him and have him work on puzzles.

Another therapist works on strengthening his arms and developing his coordination. Because his body was not getting enough oxygen early on, his fingertips are clubbed, interfering with his motor skills.

His ongoing medical care consists of monthly blood tests and a visit to the doctor every three months.

The Browns rely on California Children's Services and other social programs to pay for the care. They also are trying to find a preschool for Hevanne.

Henrietta, 45, said she has to deal with the prospect that Hevanne could develop serious health problems and may need more surgery.

On the brighter side, some patients, who have the third surgery to the vascular system can stop taking medication and live with reasonable physical limitations. There are plenty of survivors in their teens and early 20s, and Henrietta met a woman who is in her 30s after a transplant.

"They told me Hevanne could die, but I don't look at it," she said. "I let him live. Tomorrow is not a promise for any of us."

Virginia Wilson, foster care manager for Stanislaus County, said there is always a need for dedicated foster parents to care for special-needs children.

"We may not have a high-need placement for months, and then we may have two or three at a time," she said.

'A lot of hours, lot of heartache'
The parents must be licensed for foster care and receive medical training in feeding tubes and administering medication. The government provides extra assistance, ranging from $79 to $915 above the monthly foster care rate, depending on the child's medical needs.

"It takes a very special person," Wilson said. "There are a lot of hours, a lot of heartache. It requires a lot of care and empathy on behalf of the foster parents."

John Brown, an inventory analyst for the Ford Motor Co. parts distribution center in Manteca, said he was well aware of Henrietta's work with foster children before they married.

Caring for special-needs children requires a commitment and teamwork from both parents, he said. "Your life is a little different," he said. "Your vacations have to be family-oriented."

The family went to the snow during the Christmas holiday, and their road trips are planned so a hospital is never too far away. They plan on a cruise in the Caribbean in August.

Dr. Saba said he has a great deal of respect for the Browns.

"For a foster parent to decide to adopt him is amazing to me," he said. "He is not a healthy kid, but a child who may need a heart transplant. It takes a special person to do that."

Stanislaus County residents can inquire about caring for special-needs children by calling the county foster care program, 558-3983. Information also is available from foster care and adoption agencies.

Henrietta Brown, holds her adoptive son Hevanne, 3, who was born with heart damage. 'There are a lot of sick, sick babies and they just need some love,' she says. The Browns also are raising Amontay, seen reading in the background. Henrietta has had the 12-year-old since he was 2. He was not expected to live to age 3. Hevanne Brown, 3, is eating on his own and playing like a regular tyke, according to his adoptive mother, Henrietta Brown.