THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Saturday, February 25, 1995 TAG: 9502250025
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: By Marie Joyce, Staff writer
LENGTH: Long : 366 lines
ANDI MCCUSKER would stare at her daughter's hands.
The left hand bent permanently at the wrist, its underdeveloped thumb hung uselessly, the middle and index fingers curved like little hooks. On the right hand, the three middle fingers clenched into the palm, the thumb and pinky twisting to meet over the top of the fingers.
They were as tiny as a doll's fingers. Hands that would never clutch a crayon or clasp someone in an embrace, reach for a diploma or wear a wedding band. Hands that would never hold a baby of their own.
Andi loved those little hands.
They told the children just before Christmas 1993.
Jeff McCusker set a video camera on a tripod in the living room. He and Andi gathered the three children on the couch in front of the fireplace.
Erin, who was 9, thought: ``I hope they hurry.'' Her favorite TV show was about to come on.
Jeff said they were getting a special Christmas present, but it wouldn't arrive until summer. Andi reached into a bag at her side and pulled out a package of diapers.
Erin shrieked with excitement. Then Andi told Erin to look closely at the package.
Girls diapers.
Erin hugged the package tightly to her chest. She rested her head on her mom's shoulder and let a few tears slip.
For a while now, she had been asking for a sister to balance out her two brothers, 7-year-old Danny and 4-year-old David.
Andi said they weren't sure the baby was a girl. They just had a feeling.
Erin, who was a fourth-grader, started making plans. She and her sister would hang out at the mall. In a few years, she'd be driving her sister to school.
In the seventh month, something was wrong on the gray shadow of the sonogram.
The test uses sound waves to give a picture of the baby, including the internal organs and position in the womb.
The baby's hands were clenched, not opening and closing. The eyes were too close together, the ears too far down on her head. The chin was too small.
The doctor drew fluid from the sac around the fetus with a long, thin needle, a procedure called amniocentesis, and ordered tests.
Jeff and Andi told the children to pray for the baby.
The verdict, delivered by a geneticist at Tidewater Perinatal Center, was something they had never heard of: trisomy 18. There was a lethal flaw in the genetic material in every cell of the baby's body.
Among the baby's 23 pairs of chromosomes, there was an invader - a third chromosome was attached to the 18th pair. Chromosomes, located in the nuclei of cells, contain hereditary material that ordain growth and development.
Trisomy 21 is Down Sydrome. But trisomy 18 is much more deadly.
Their baby almost certainly would die before the first birthday, geneticist Cari Long told them. Many don't even survive the delivery. Andi and Jeff held onto each other and tried to take it in.
The baby would be severely retarded, with terrible physical problems. Trisomy 18 babies can have as many as 130 abnormalities.
One other thing the amniocentesis told them.
The baby was a girl.
Doctors don't know what causes trisomy 18, and they can't fix it. The randomness of misfortunes like these is supposed to be a comfort to parents, said Charles Bosk, a sociologist with the University of Pennsylvania's Center for Bioethics who has studied these types of cases.
But it isn't.
``No one wants to believe that life is random,'' said Bosk. ``It means that things happen to us that don't have meaning. . . . Your life has been turned upside down for no purpose at all.''
Even though Andi was in the seventh month, the McCuskers could have ended the pregnancy. In most cases, state law doesn't allow abortions after the 24th week. But for some lethal conditions, a doctor can induce labor to end the pregnancy at any time, said Long. Trisomy 18 sometimes fits that criteria.
Since the technology to predict trisomy 18 became available, the vast majority of parents who receive such a verdict opt for abortion, said Deborah Eunpu, a genetic counselor at Beaver College in Pennsylvania.
While no firm statistics are available, one study says that as many as 98 percent of parents choose to end the pregnancy, she said.
For the McCuskers, there was no choice.
``We always felt that no matter what the amniocentesis showed. . . having an abortion was not an option,'' said Jeff, a television producer at The Family Channel.
It's not just religious doctrine for them. Andi had an abortion years ago, when she was in college. She was 20, she didn't love the man, and she was scared. She didn't really think about it beforehand.
The physical pain passed. The emotional trauma lingered. Andi got counseling and learned to forgive herself.
``I would never, ever do anything like that again,'' she says now. ``God is the giver of life. . . . He creates us with a plan and a purpose.''
In the spring of 1993, the family had lost another child midway through a pregnancy.
A sonogram in the fourth month had shown that their baby's heart had stopped beating. Doctors induced labor, and Andi and Jeff were able to hold the baby, a boy.
He was the size of Andi's hand. His features were perfectly formed and his skin was translucent. They named him John Michael. They never found out what killed him.
They weren't about to lose this baby, too.
Jeff and Andi told their children everything they knew for sure about this new baby, sparing them some of the details about her condition that they wouldn't know until the baby was born. They said they would all love her, no matter what.
One day, Erin overheard her father talking to someone on the kitchen phone. He was saying all kinds of things she didn't know - that the baby would have a hole in her heart, that she probably wouldn't walk, that she might not be able to see or hear.
Afterward, Erin confronted her father.
``Why didn't you tell me?'' she asked.
``I didn't want to scare you or get you upset,'' he said, and he explained that doctors didn't know for sure how bad the baby's situation would be.
They went through the normal preparations. They pulled their baby stuff out of storage. Little T-shirts and little blankets. But they didn't bother to fix a separate bedroom for her, since they didn't know if she'd ever be able to use it. They put the white, straw bassinet next to their bed.
Jeff worried that he didn't have the personality or temperament to cope with a handicapped child. They already had three children, and three was a handful.
He kept thinking back to a day in early spring when he went to the opening ceremony for his kids' Little League. As he was strolling around, he had noticed that one of the diamonds was being used by teams of handicapped kids.
The rules were different. Adults helped the kids get around the bases. Nobody struck out.
He watched the children's faces. ``You could see these kids were having fun,'' Jeff said.
Over the next few months, Erin's prayers were angry. She didn't have any other sisters, she reminded God. ``Out of all the sisters in the world, how could this be mine?''
Andi and Jeff's expectations, and prayers, were grounded in the awful reality. Please Lord, they asked, let our baby survive the delivery. Let her live long enough to meet us.
Delivery in July was hard and slow. First the baby's heart rate faltered. Later, it improved. Then the doctor had to manipulate the uterus to turn the baby from the breech position.
But the baby made it alive, and by late evening, Andi was hearing the gurgle as the staff siphoned out the baby's air passages. She strained for the baby's first cry. It seemed to take forever - longer than for any of their other children.
Suddenly, the baby wailed. And it wasn't a thin, sickly sound, either.
``It was a good cry,'' said Andi.
They named her Amy Beth - each name a favorite of each of her grandmothers.
Amy means beloved.
In the dark well of the back seat, Erin tried to picture her sister. Weird faces and shapes floated through her mind.
She and her brothers had spent the day at home; late that evening, one of their uncles drove them over to the hospital.
Erin, who had turned 10, cried a bit. She knew she couldn't cry when she looked at this new creature.
Before the children could go into the nursery, a hospital worker told them what they might see. The baby hadn't been cleaned yet. She'd still have a tube in her throat and that funny thing babies have on their belly buttons.
The three children had to wash up and put on special robes, because it would be really bad if a germ got on her.
Finally, they went in.
Amy hardly looked strange at all. Sure, her ears were lower down on her head than on most people, and her chin was shaped funny, but that wasn't so bad.
Erin thought Amy's nose would be squished in, but the baby had a long nose like the rest of the family. She thought her eyes would be shaped funny, but they weren't - not much, at any rate.
``I started getting used to her. I thought, `This isn't so bad. Why was I so afraid?' ''
Danny, now 8, and David, 5, didn't even seem to notice her physical problems. ``My brothers were like, `Ooh - she doesn't have any clothes on.' ''
They couldn't kiss her - they might give her a germ - but they stroked her soft skin.
Andi and Jeff expected they'd have to leave Amy at the hospital, but the little girl was well enough in two days to go home with her mother. Jeff and Andi wondered if the hospital was letting her go because she didn't have a chance.
Within a week or so, the McCuskers had fallen into the routine of a new baby, feeding and changing diapers and drawing bath water.
Amy had a cute, pursed little mouth, and long eyelashes like the other children. And her little hands.
``I loved those hands, even though they weren't perfect in the world's eyes,'' said Andi.
There were extra duties with this baby. She received physical therapy to loosen her clenched hands, wearing a neon-pink split too tiny for a woman's finger. For a time, she had trouble breathing and had to be connected to an oxgen tank with a thin tube secured under her nose. Andy learned how to change the tank when it ran low.
The children learned to wash their hands before touching the baby, and to stay away when they were sick. She was especially susceptible to illness.
She was so tiny and frail that they handled her tentatively at first, until they got used to her.
Andi and Jeff found joy in holding their daughter. Her eyes, which were turning from blue to brown, looked into her parents' - something doctors had said she might not be able to do.
Amy made little chirps, and cranky noises when she got bored in her playpen, and a sound so much like a meow that the family laughed when they heard it.
Jeff watched his wife's gentle love for the baby. They were never going to have the same rewards from this child as from the others, but Andi still cared for her in the smallest of details.
Life didn't change much for the other children, although Amy took a lot of her parents' time. Andi and Jeff thought there might be some resentment, but the children doted on her. Sometimes, Erin would help her grandmother care for Amy, so Mom and Dad could sleep in, or she'd play with the boys so Mom could have more time with the baby.
Erin even changed a few diapers, though not often. Amy was so tiny that the smallest diapers came down to her knees.
Amy loved to be bounced on Erin's knees. She liked her mobiles and playing peek-a-boo. Erin would shake a rattle at her and sometimes move Amy's hand to touch it. Every once in a while, the baby would reach for it herself, but not often.
The baby liked music, too. Andi would hold her daughter and sway around the room to the rhythms of big band music.
They dressed her in frilly, pink outfits and shot roll after roll of pictures of Amy cradled by family and friends.
Nolly and Bob Murray, old friends who used to belong to the same church, made the drive from Maryland, where the McCuskers lived before moving to Chesapeake in spring 1993.
She's a nurse; he's a fire and rescue worker. They steeled themselves to be strong when they looked at the baby.
When they held Amy, they realized they had been wrong about her. She was perfect.
``Basically, they just had a little, tiny baby doll,'' said Bob.
Amy grew longer but not much heavier; 4 pounds, 1 ounce when she was born and just more than 5 pounds at her heaviest. Trisomy 18 babies usually have little body fat and muscle tone. Soon her preemie clothes were too short, but regular clothes were too wide.
The McCuskers thanked God for every day.
``They were sitting on the edge, waiting for her to get sick - when would it happen?'' recalled Nolly Murray.
Andi would browse through the newsletter of a national support group for parents of children with trisomy 18 and related disorders. Parents had sent in pictures and stories about their children. She stared at the rare cases of trisomy 18 children who lived past their first birthdays.
She knew that probably wasn't going to happen for Amy. Life expectancy for is four months, and Amy had a particularly bad case - the genetic mutation was in every cell of her body.
Andi looked at the pictures, anyway.
Jeff didn't want to get his hopes up.
``I think I became a little guarded,'' he said. It wasn't that he loved his daughter any less. He knew that he and Andi would have to make a tough decision one day. He had to be ready.
At every turn, they faced choices about Amy's many health problems. How much of the girl's short life should be spent getting treatment, when the eventual outcome would be the same?
They decided against heart surgery to correct a hole between Amy's two ventricles. It's a common condition for children with trisomy 18.
``Every decision we made about Amy was always difficult,'' said Dr. Sue Lee, Amy's pediatrician. ``At every point, we were trying to balance how far to go and how much to do. Amy finally developed a problem they had to tackle.
Most trisomy 18 children have a hard time sucking and swallowing. Food pooled in Amy's throat, hovering above her lungs and causing her to choke.
Feeding her became a slow, elaborate process. Just a little food, and would have to stop for a few minutes while Amy recovered her breath. It took an hour or so to get an ounce of food down her. Dr. Lee upped the calories of Amy's food, so the little that she managed to swallow would count for more. Lee investigated treatment options. The only possibility was surgery to implant a feeding tube into her stomach. Jeff and Andi struggled with this one. Their baby would certainly suffer during the procedure.
In early December, they scheduled a consultation with a surgeon.
Amy never made it.
Christmas was approaching, along with Amy's 5-month birthday. The McCuskers celebrate Christmas in a big way, and this year was no different. They covered the front lawn with large plastic figures - a nativity scene, carolers, plastic street lights, an angel. The house was decorated with wreathes and garlands and a large cross over the garage door.
About 10 days before Christmas, Andi noticed that Amy was irritable and eating less than usual. It was a virus. The doctor put her on antibiotics.
Then Amy's fever shot up; she had pneumonia. This time, there was no debate about what to do. She went to Children's Hospital of the King's Daughters on Dec. 22.
She was put on a ventilator. Doctors said she might not make it through the night, but she did.
On Christmas, the family opened their presents at home, then went to the hospital to visit Amy.
The baby lay on her left side. A bulky bandage on her right leg protected the intravenous tube that penetrated her foot. Her thin chest bristled with electrodes attached to monitors. A feeding tube snaked through her nose and into her stomach. Three other tubes joined into a single tube that was jammed into her mouth. Her right arm was strapped down to keep her from pulling at the tubes.
``It was just crushing to see her like that. She was just alert enough to know she hurt,'' said Nolly Murray. She and her husband had driven down for a visit.
By Jan. 2, doctors had been able to turn down the ventilator and Amy was breathing some on her own. Any more time on the ventilator, doctors said, wouldn't improve her condition. They could remove the tube.
But they didn't know whether she would live without the machine.
Andi and Jeff had to choose: If she started to die, should they put her back on the machine?
``No parent should ever have to make that decision,'' said Diana C. Veazey, a chaplain at Children's Hospital. ``It's the hardest decision they'll ever have to make. It is also the most loving - to be willing to let their child go in the best interest of the child.''
For more than a week, Andi had watched Amy struggle against the tube, feebly trying to raise a hand to pull it out. She remembered that her father, who had once been on a ventilator, said he would rather die than face it again.
They told the staff: If she starts to die, let her go.
One by one, Amy's family took turns holding her after the tube came out. Erin was thinking of a play she had been in. One of the characters, a little girl, had a cat that lost an eye. The little girl was afraid the other cats would reject her injured pet, and she held the cat and sang ``Jesus Loves Me.''
When Erin's turn came, she cradled her sister and sang, Jesus loves me, this I know. . .
Amy lingered into evening. Andi and Jeff slipped into the lounge to eat some sandwiches Bob Murray had fetched for them. Nolly Murray and Jeff's mother were watching the baby.
Suddenly, Amy's limbs jerked, and her eyes stared straight ahead.
Jeff and Andi rushed into the room, and Andi gathered her daughter in her arms. Amy's breathing grew so shallow that it stopped registering on the monitor. The group watched as the baby's heart monitor slowed, slowed . . . and stopped.
Andi had been tortured by doubt as the tube was coming out. But when she saw how Amy relaxed the minute the tube was gone, how peaceful she looked for her final hours, Andi knew peace, too.
``I knew that she was going home,'' she said.
Amy's portrait, with her sparse hair and eyes that never quite turned brown, hangs on the McCusker's dining room wall along with Danny's and David's and Erin's.
Her bassinet still stands by her parents' bed, filled to the top with her toys.
Andi is in no hurry to give Amy's things away. Her friends tell her she'll know when the time is right.
The bills are still coming in. Her last stay in intensive care was expensive, almost $36,000. So far, they estimate, the bills have amounted to about $51,000 since she was born. Their insurance covers it, but the 20 percent co-pay adds up.
It's a small price to pay.
Before Amy came, Erin was afraid of handicapped people. ``I just really didn't know how to act around them. I'd think, `That person is retarded. Why should I be their friend?' ''
After Amy was born, her attitude changed. She still is uncomfortable sometimes, but she tries to put it behind her. ``Why should I be mean to them? Because if I was mean to them, I would be mean to my sister.''
For Nolly Murray, Amy reinforced her belief that abortion is wrong.
``She was so sweet, and we wouldn't have known. . . . Maybe it wouldn't have been as hard on us, either, but she wouldn't have affected us as she did.''
Bob Murray learned not to make demands of God, to think he always knows what's best. Before Amy was born, he had asked God to heal her in the womb. Now he knows Amy was exactly who she was supposed to be.
He should have prayed ``Whatever is supposed to be, let me just accept it.
``Her life taught us that in the five months she was here,'' he said. ``For a 39-year-old man to learn that in five months. . . ''
For Jeff and Andi, the reward was seeing and hearing and touching her.
``Her five months were a joyful five months,'' said Jeff.
It's a dark, misty Thursday afternoon. The boys play boisterously outside. Erin sits on the living room couch, flashing a grin with some missing baby teeth and twisting her hands in her lap.
Erin has stopped being angry at God for what happened to her sister.
``God knows what's right, and he has a plan. He knew we would be the right ones to take care of her,'' she said. ``I guess we did a pretty good job.''
She believes what the grownups have told her - that God sent Amy to bring the whole family closer to him, since they had to love her so much.
After all, wasn't she sort of a miracle baby? She lived longer than she was supposed to.
Still, Erin doesn't feel that she has gotten the whole story from God. She's still asking and listening.
``I'm not sure why he sent her to us. He'll just give us answers as time goes by,'' she said.
When she prays, she asks Him to say ``Hi'' to Amy for her. ILLUSTRATION: Color photo by Martin Smith-Rodden, Staff
Jeff and Andi McCusker are surrounded by their kids... by CNB