The Georgia Bulletin

Fri, Nov 21, 2008


What I Have Seen and Heard - Archbishop Gregory's Weekly Column

Print Issue: September 27, 1990

SVDP Helps Anna's Parents Cope

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."