| By Rita McInerney
When Sheila Bissonnette's telephone rings it is usually one of the 800 North
Georgia members of the St. Vincent de Paul Society with information or queries.
But about once a year, she recalls, someone phones with a story that will stay
with her for the rest of her life.
"That's what happened the day Patricia Whited called," she says.
The young woman said that she needed help. The family was having some
financial difficulties. More importantly, she needed someone to talk to.
"She had been referred to us by her parents' pastor in Alabama,"
the executive director of the St. Vincent de Paul Society says. This was about
six months ago.
Ms. Bissonnette made an appointment to visit her the next morning. Following
the rules of the society, she was accompanied by another member. As they
entered the trim colonial two-story in Norcross their attention was captured by
the baby girl playing on the floor.
This was her introduction to Anna, now a 16-month-old toddler with blonde
hair and gifted with the trusting friendliness of well-loved babies.
But there are faint circles under Anna's big blue eyes, a tube to her nose,
tubes and a catheter attached to her little body. Eighteen hours a day she is
connected by these tubes to three infusion pumps that provide the nourishment
and medication she must have to live.
Anna was born with a rare condition doctors call short-gut secondary to
mid-gut atresia. This means she doesn't have the intestines necessary to the
digestive functions of the human body. Surgery shortly after her birth could
not correct the condition.
"Doctors have found out how to keep short-gut babies alive,
but don't know how to fix it," her mother Patricia says. "They can't
repair the intestines. They can keep her alive with fluids."
Her constant daily care is given by her mother and her father Earl. Anna
takes six medications four times a day. The tubes which drip formula and
medicines into her must be cleaned, stoma and catheter monitored.
"We're together like Siamese twins," the young mother says. After
work, Earl Whited shares the responsibility for Anna's care. "Pat hasn't
seen anything but the inside of this house for 16 months," he comments.
They are skilled in cleaning the tube, draining the stoma. As their familiar
hands touch her, Anna is as relaxed and playful as a baby having a diaper
change.
Their care is meticulous. Doctors have impressed them well with the need for
following a time schedule and being exact with every procedure.
A nurse comes in biweekly to take blood samples. Anna's monthly visits to
Emory Clinic are made during the four hours she is off tubes and monitors, free
of the IV pole with its life-sustaining fluids.
Anna's care makes normal family life impossible. Doctors will allow no one
but a registered nurse to be with her if her parents need to take a few hours
off. Earl's two sons, 11 and 14, often have to fend for themselves. This
troubles the couple.
Costs are staggering. By the time they were forced to give up medical
insurance, Anna's expenses amounted to almost a million dollars. Daily cost of
her home treatment is $1,200. Rental for each of the three infusion pumps is
close to $500 a month.
When St. Vincent de Paul Society came into the Whited's lives, their
financial picture was grim. Old bills were unpaid, medical expenses climbing.
Parents and siblings of both helped however they could.
SVDP "helped them become aware of looking into disability assistance -
SSI and Medicaid," Sheila Bissonnette says.
"Because of how complicated the case is," she goes on to
say, "the central office has remained in contact and has notified other
conferences, asking for assistance. About eight or nine parish conferences have
helped. At times when the parish conference and the central office have big
cases, they can call on each other."
This networking provided financial aid and advice, referrals and donations
of miscellaneous items, including a used car when theirs was repossessed.
Vincentians have also offered prayer support over the last six months.
Patricia Whited admitted she was "going crazy" at the time she
called the SVDP. "Sheila helped us, showed us the error of our ways."
The financial assistance was "definitely" a help as was the counsel
on managing their income.
"Knowing I can call her and whine a little helps a lot," Anna's
mother says.
Because Earl Whited is paid every two weeks, the $105 SSI monthly check can
fluctuate. The Whiteds already know that checks for next month and for April,
1991, will be smaller because he will be paid three times in both months.
For them, he says, it's a constant struggle on "how to control the
uncontrollable" with living costs always getting higher. In their
circumstances he has begun to think they might be better off "if my salary
was less."
While Medicaid covers most of the home medical expenses it does not pay for
the home hyper-alimentation. This is the administration of nutrients by
intravenous feeding.
The Whiteds had been married two months when Patricia became pregnant. Life
was promising. Then at seven months she learned there was something wrong with
her baby. Doctors suggested an abortion but that word is not in her vocabulary.
When she delivered, about six weeks early, her infant girl "looked
perfect." The next day the doctors gave them the sad news and performed
the surgery.
Sixteen months later, they look at their little daughter with love and know
"she's a tough kid." They try to keep a hopeful attitude most of the
time but there are the fears that won't go away.
Suppose she gets a blood infection from the catheter? Suppose her liver
becomes damaged from the fluids? "It's scary. Earl and I talk about it all
the time," Patricia Whited admits. "But we know we're doing
everything right."
Emergency hospitalization is not unusual and their confident attitude
changes "if we see her in pain."
When people ask what they can do for Anna to help maintain her quality of
life, they can only answer "make her better."
As they struggle, they have the assurance that St. Vincent de Paul Society
will be there for them when the situation seems hopeless, when courage flags.
Sheila Bissonnette thinks of the young woman who chose life for her baby and
reflects: "This year has been full of publicity and demonstrations at
abortion clinics. Many days I drove by the clinics and didn't participate in
the activities. My own and the society's pro-life stance has been made in a
quieter and more costly way."
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