Date: Fri 13-Sep-1996

Publication: Bee

Author: KAAREN

Quick Words:

Ghent-Brain-disorder-Lions

Full Text:

w/photo: A Family Rises To The Challenge Of A Child's Rare Brain Disorder

B Y K AAREN V ALENTA

Six-month-old Summer Ghent turned her head toward the sound of her brother's

voice and abruptly stopped fussing. Her eyes appeared to search the face of

Richard, 10, and what seemed to be a slight smile tugged at the corners of her

mouth.

"She definitely responds to us," said Summer's mother, Barbara Ghent. "Every

little thing she does is exciting."

Summer is nearly blind. She was born in February with portions of each brain

lobe missing. The condition is so rare that a listing in six separate data

bases has yet to produce a match of a child with the same condition.

"When Summer was born, they didn't think she'd live - but she did," Barbara

Ghent said. "They didn't think she'd be able to eat, so they inserted a

feeding tube. But a nurse tried a bottle and Summer started sucking right

away."

Although Summer is tiny, just 12 lbs 8 oz, and still can't hold her head up,

she's proven to be a fighter. She's been sick only twice, with a sinus

infection and an ear infection.

"Developmentally she is far behind her peers, but no one knows what the

prognosis is," Mrs Ghent said. "The doctors called her condition a reduction

deformity of the brain."

Before Summer was born, doctors realized that there was a problem which they

suspected was hydrocephalus, a collection of fluid which was compressing brain

cells.

"They recommended a premature caesarian delivery so that a shunt could be

installed in the back of her neck as quickly as possible to draw off the fluid

from her brain," Barbara said. "What they discovered after delivery was that

the fluid wasn't compressing the brain, it was filling the space where the

brain was missing."

Much of the time immediately after Summer was born passed in a blur.

"It has been stressful," Barbara Ghent admitted. "It's been hard emotionally

for our entire family. It's even been tough for (our daughter) Madison, who

was only two years old when Summer was born and had been used to being the

queen - the center of attention."

The Ghents, Barbara and Peter, and the three children, live on Shadblow

Terrace in the Riverside section of Sandy Hook, in the house where Peter has

lived all his life. Peter is a carpenter. Before Summer was born, Barbara

worked for a marketing company in Ridgefield, collecting demographic

information used for product promotions.

As the months passed after Summer's birth, the infant began to receive

developmental, physical and occupational therapy from the state's Birth To

Three program. She's been examined by neuologists, neuosurgeons, and

neonatalogists as well as her local pediatrictian, Dr Humberto Bauta.

"A wonderful lady also comes once a month from the Board of Education and

Services for the Blind to teach me how to stimulate Summer visually," Barbara

Ghent said. "Summer has optic atrophy - she's missing some of the nerves that

go to the eye. She's light-sensitive, however, and her right eye is stronger

than the left so she's always turning her head to the right."

Barbara Ghent began to read everything she could find about brain-damaged

children and programs to assist them. Eventually, a member of the staff at The

Book Review in Sand Hill Plaza, found a book in his computer listings which

sounded promising. The book was about the ground-breaking work done with

brain-damaged children at the Institutes for Achievement of Human Potential

(IAHP) in Philadelphia. This facility, which has worked for more than 20 years

with children afflicted with all types of brain disorders, has many remarkable

success stories.

"Some children, who had entire sections of their brains removed in

hemispherectomies, are now doing as well, if not better, than their peers,"

Barbara Ghent said.

IAHP accepts only children whom it believes can be helped. The program

involves intensive training for the parents and a technique called

"patterning" which in which at least three people work with the child at the

same time to stimulate the brain so that parts of the brain learn to take over

functions of damaged or missing areas

"One person manipulates the (child's) head, and there's one person on each

side to move the (child's) arms and legs," Barbara explained. "First it's to

pattern crawling, then creeping, and walking."

"The patterning and other therapy takes place 13 hours a day, seven days a

week - as long as it takes," she said.

After a review of Summer's medical records, IAHP accepted her for the program.

But because the program is not covered by insurance, the Ghents must raise the

money themselves. The initial cost, for the intensive one-week session for

parents, is $2,500. In that session, parents work out the therapy plan which

they will follow at home. Two months later there's a follow-up evaluation by

phone and mail.

"Then Summer and we go for two days for an assessment and evaluation," Barbara

said. "Then we go for a week every six months. The program gets more expensive

as it goes on. It's about $50,000 for five years. Some children make it in

two, some in five, some 10."

The program isn't successful for every child, Barbara admitted, "but even if

it doesn't work, it's better than not doing anything. This is our last hope,

probably the only one at this point."

In July Barbara went back to work in an attempt to earn money to pay for the

program. "Peter had to come home from work early to take care of the

children," Barbara said. "I wasn't getting home until 2 to 2:30 am and was

only getting three hours sleep a night. Summer wasn't getting what she needed

from me and with her medical bills, we just couldn't get ahead."

The week-long IAHP course for parents is limited to 90 and is held four times

a year. The June course was filled so the Ghents attempted to enroll in

September but were unable to save the $2,500. They are tentatively booked for

December.

"The next one won't be until next April, by which time Summer will be a year

old," Barbara said. "Every month I've missed I feel like we've slowed down her

possible progress and she's that much further behind her peers."

"We want to help Summer be the best person she can be. She has a long road

ahead of her."

The Newtown Lions Club is planning to hold a hamburger/hotdog dinner at the

Sandy Hook Firehouse to raise money for the expenses related to Summer's

treatment. Lions Club member George Mattegat said the event will be held from

2 to 6 pm on a Saturday later this month or during the beginning of October at

the Sandy Hook Firehouse. Tickets will not be sold; donations will be accepted

instead at the door. Donations also may be made by sending checks made out to

the Newtown Lions Club (indicate on the memo line of the check that it is for

Summer Ghent) and send to: Newtown Lions Club, PO Box 218, Newtown 06470.