Phyllis Reusche’s Children : A Mother’s Struggle to Survive the Tragic Pain of Three Deaths From a Fatal Hereditary Disease

It was Phyllis Barrett Reusche’s 24th birthday--Nov. 20, 1967--and she was feeling on top of the world. She had assessed her life and smiled in satisfaction--”I had three beautiful sons, a husband I loved, our own home. I thought to myself, ‘I have everything I have ever wanted.’ And I was very happy.”

Five months later, she was told by her pediatrician that her two youngest sons were going to die, victims of Hunter’s syndrome, a rare genetic disease, and that there was a 50-50 chance that the 8-month fetus she was carrying, if male, was also doomed.

Randall Lee Barrett, the child she was carrying when her perfect world crumbled, was buried on Feb. 13, 1981. He was 12 years old.

James David Barrett was buried on Feb. 24, 1984. He was 18.

Jared Wesley Barrett was buried on Oct. 25, 1986. He was 19.

They were too large for children’s coffins, too small for adult coffins, so their father, Richard, built a proper wood coffin for each. Their grandmother lined the boxes in pale blue velvet and made little white burial suits.

For almost 20 years before that, Phyllis Reusche had lived a nightmare, watching helplessly as her sons followed their pre-destined path from beautiful babyhood to dwarfism, their bodies cruelly distorted, their minds stunted at preschool level.

They were years in which her marriage fell apart. In times of terrible tragedy, she reflects, “You either draw together or you pull apart. We pulled apart.” A second marriage, to Robert Reusche, failed to survive the stress.

Today, 16 months after Jared’s death, Reusche is again starting to feel a little of what she felt on that long-ago birthday. She has a handsome son who’s on San Diego State University’s championship surfing team and a pretty and talented teen-age daughter who was her junior high school valedictorian, is a song leader at El Modena High and will star this month in an Orange Unified High School District production of “West Side Story” at Villa Park High in Orange.

A chance meeting outside a Laguna Beach restaurant last summer with a man who had lost his wife to cancer has developed into a caring and supportive relationship. And Reusche has recently acquired a small paper goods line, the Bear Facts, for which she has big plans.

“I want to live in the future,” she said, “not in the past.”

Phyllis Reusche’s early years were, as it turned out, something of an omen. “My first memory of my mother was of seeing her in her casket,” she said, “trying to reach her and not being able to touch her.”

Reusche was only 4 when her mother, riding in the sidecar of a post-World War II family motorcycle, was killed instantly when rear-ended at a stoplight. Phyllis and her sister Patricia, both riding with her, survived.

They were brought up with the help of their Danish-born grandmother until, when Phyllis was 8, her father remarried and the family moved from Long Beach to Buena Park. That was the age at which Phyllis was baptized in the Church of Jesus Christ of Latter-day Saints.

This was a formality but, four years later, after looking into other faiths, she made her own commitment to the Mormon church.

“From the time I was 12,” she said, “I did everything the church told me to do and I didn’t do anything the church told me not to do.” No dating until 16, no drinking or smoking or wearing strapless dresses.

At Western High in Buena Park, Phyllis Petersen’s religion set her a bit apart but still she was popular--head of the drill team, a homecoming court “belle.” When she was a junior her boyfriend was a senior, and football captain.

Moved to Utah

She smiles and says, “A perfect story, right?”

She went on to Brigham Young University and Dick Barrett, her high school steady, visited often. They were young, they were in love--and intimacy before marriage was banned by her church, which he had joined. “It was either no sex or marriage,” she said.

At the first semester break, they married. She was 19. As was typical in 1962, he continued his pre-pharmacy studies, transferring from Cerritos to BYU, and she went to work.

“We were young, we were Mormon and we wanted to have our children close together,” she said. Assured by doctors that she was healthy, she became pregnant. Dick quit college and they returned to California, where he landed a good job with a large construction company. Their son, Richard Adam, was born on Nov. 18, 1963.

He was a picture book baby--healthy, happy and alert.

Eighteen months later, on May 25, 1965, James David was born. He, too, was a beautiful baby but, from the beginning, was constantly ill. And he cried all the time.

When he was 18 months old, his grandmother Barrett came to visit and said, “Something’s not quite right with David. He hasn’t changed since the last time I saw him.”

Reusche wasn’t unduly alarmed. She thought the child was probably being compared with an apparently gifted brother. Besides, her pediatrician assured her everything was just fine.

The Barretts wanted four children, the number they felt they could educate, and when David was 9 months old, Reusche became pregnant for a third time. In June of 1968, another son, Jared, was born, a blond look-alike for David.

More and more, she began to worry about David. It did seem odd that the child’s arms were bowed, his lips so thick, his fingers so stubby. On the next well-baby visit she told the pediatrician, “I want to talk to you.”

This time she was not to be put off by his assurances that “some children are just sick a lot.” She confronted him: “How come, then, his arms aren’t straight?”

As she recalls, he then took a medical text from his desk, read for a bit and then suggested that David and Jared be given a certain urine test. He told her matter-of-factly, “We may have a rare genetic disease here.”

Reusche’s blood ran cold. “There I was, sitting there, eight months pregnant.”

The test results came back in a week--positive. “The doctor,” Reusche said, “told me my sons would deteriorate and eventually die,” that the life expectancy with Hunter’s Syndrome was between 6 and 12 years. And that there was no cure.

At eight months, it was pointless to test the fetus she was carrying.

Chose Not to Believe

When told the truth--that this disease that strikes one child in 90,000 had hit two and possibly three of her children--Phyllis Reusche simply chose not to believe it. She denied the awful truth even when her youngest son, Randy, was born, on June 28, 1968. “They told me in the hospital, the day he was born. But it didn’t matter because I didn’t accept it. Like always, I was going to make everything perfect. I was going to fix what was wrong.”

According to Dr. Kenneth Dumars, a professor of pediatrics at UC Irvine whom Reusche contacted for information, Hunter’s Syndrome is a biochemical disorder inherited from the mother and caused by a “very uncommon” mutation in one of the X chromosomes, of which females have two, males one.

The mutation, he said, may have originated with Reusche’s mother, or generations back, but because Reusche’s mother had been dead for years at the time the boys were diagnosed, that could not be verified.

If a woman is a carrier, Dumars said, 50% of her female children could be carriers and 50% of her male children could have the disease--because a male child gets his Y chromosome from his father and his one X chromosome from his mother. The odds went against Reusche. Her older sister, who has since tested positive for the gene, has six normal children.

The disease is so rare, he said, that “the average pediatrician practices for 40 years and never sees one kid with this problem.” Reusche “read everything that was written” about the disease. (Among early symptoms are prominent forehead and poor coordination. Gradually, a substance that normally is expunged by the body builds up in the cells and invades vital organs. These children develop pulmonary infections, neurological and digestive problems, their mental development stops and, ultimately, they become bedridden and die.)

She took her boys to UC-San Diego to be seen by visiting European specialists. She took nutrition courses at USC. “I structured my whole home around these three children,” she said. “Either I was going to cure them or God was going to cure them. They had so much love and so much understanding. But that was the Catch-22. Richard (her healthy son) had to fit into this flow. He even had to become the little helper.” She knew this was unfair.

Pregnant Again

Then one day she learned that, despite having used birth control, she was again pregnant. In 1969 amniocentesis to detect fetal abnormalities was not available and abortion was legal only if the mother’s life or mental health was endangered. “I had to have an abortion,” she knew, “but first I had to convince the psychiatrists that I was near a breakdown. By the time I convinced them, I was.”

One day Reusche was visited by apostles from her church. It was then, she says, that “I realized the children were not going to get better. If they were going to be healed, the apostles would have told me. But they just said, ‘The children are ready to move on.’ ”

Convinced at last of this inevitability, she was willing to listen to a child psychologist who had been urging the Barretts to consider placing the boys in a care facility. At the time all three were in diapers and it was like having constantly sick triplets. “I was exhausted,” she said.

In December, 1969, the Barretts decided to place the boys in a foster home as an interim step toward institutionalization. They came home weekends and attended a school for the handicapped, where Reusche was Cub Scout den mother. She insisted that it be she who took them to doctors and hospitals.

In 1971, Reusche learned that she was pregnant again. Amniocentesis showed that this fetus was normal and the Barretts were told, “It’s a girl, with brown hair and brown eyes.” On April 23, 1971 , happy parents welcomed Cristol.

The boys lived in two foster homes for a total of about 10 years, until hospitalization was mandatory. They were then placed at Fairview, a state hospital, in Costa Mesa. Reusche praises the care they received there--”Those people, every one of them, are going to go to heaven for sure.”

It was during this 10-year period that her first marriage fell apart. Later, there were several long-term relationships with men but, she said, “They knew they couldn’t deal with it. So we never married.”

She watched her sons dying and she wept. “The doctors say these children don’t feel pain and don’t understand. But if you’d seen their little bodies and the deformity I think you’d agree they felt pain.” She had done what she had to do; still, guilt gnawed at her.

In 1980, during a ski weekend in Big Bear, she met an Air Force pilot and, within the year, they married. But it was a short-lived marriage, during which she lost a son and her husband’s brother died. “When you lose two people in two years, and you’ve only known each other for six months,” she said, “there’s not much hope. He’s still a hero to me because he tried.”

Randy died on Feb. 9, 1981. One day she just “came unglued” and admitted herself to residential psychiatric care for a month.

Just ‘Fell Apart’

For several years, she said, she was on an emotional “roller coaster” and then David died, on Feb. 20, 1984, and, in 1985, Reusche just “fell apart. It all just kind of crept up on me, the reality of it.” She would sit for hours in limbo, staring at the water. Unable to hold a job, or make a decision, and now divorced, she moved with her daughter into her parents’ home.

It was Jared who made her again face life.

All along, she had been sure that neither Randy nor David, who were virtually unable to communicate verbally after the age of 6, had been able “to understand the concept of death.” But the thought had nagged at her that Jared, who had a higher intellect, might comprehend that they were dead and he, too, was going to die.

During Jared’s last months she “wanted to bring him home more than anything” but the reality was her struggle to support Richard and Cristol (by the 1974 divorce agreement, she was financially responsible for them; their father was responsible for the three afflicted boys). Through the years she held jobs as editor of a small newspaper, director of a private school and photographer. She started a business consultation firm, wanting flexible hours when Richard became a teen-ager.

When she visited Jared, they would walk or play ball, then one day he stopped wanting to do either. “I could see in his eyes something was bothering him,” she said. “And I knew he was worried about me. I understood he was waiting for me to be OK. Jared knew that I was out of control. If he was waiting, damn it, I was going to be OK.”

For Jared, Reusche pulled herself together, went out and got a job. “Soon after that,” she said, “he died.” It was Oct. 20, 1986, almost 20 years since she had first heard the words Hunter’s syndrome.

With the love and support of her family, her faith, and therapy when she needed it “to get through the day without commiting suicide or killing anybody,” Phyllis Reusche has survived, turning a tragic story into one of hope.

Reusche finds great joy in her surviving children. “Our family has coped,” she said, “We comfort each other. We always talked. I always told Cristol and Richard, ‘The boys are ill and they’re not going to get any better and we just have to love them the way they are.’ ” This year, with Reusche’s blessing, Cristol is living with her father. When Reusche talks about him, it is without acrimony--”He went through a hell of a lot.”

She knows she herself is not yet 100%--she still considers her ability to hold down a 9-to-5 job problematic--but, she says, “Since Jared died, every day, every week, every month, I just get stronger and stronger. Nothing scares me now.”

‘They Just Happen’

She has never stopped to ask, “Why me?” If she did, she says, “I’d probably answer myself and say, ‘Why not me?’ God doesn’t do things to people. They just happen. God gives purpose to things that happen, if people are willing to work with him.”

Told that she must be very proud of Richard and Cristol, she replies, “I’m very proud of all my children.” She talks about Randy and his sense of humor, the way he used to reverse the silverware on the table and laugh at his joke; about David, “the maverick, always pushing the limits,” about Jared, the take-charge, serious one.

She has never visited their graves at El Toro Cemetery. “The boys are here,” she said, placing her hand over heart, “and here,” touching her temple. And she believes she will see them again.

Most of her anger is directed toward the pediatrician who, she feels, could have saved her the pain of the two younger boys’ lives and deaths had he diagnosed Hunter’s Syndrome early on in their brother. She considered a malpractice lawsuit but, she said, “I can’t tolerate negative things. And I didn’t want to go through the trauma of trying to prove somebody did something wrong.”

Still, she hopes other parents will be aware of these insidious genetic diseases, ask questions. (Hunter’s syndrome, for example, is not routinely tested for during amniocentesis).

Thirteen years ago Phyllis Reusche bought a treehouse-like home with a slice of ocean view in South Laguna. Down the hill, on Pacific Coast Highway, is the new headquarters of “The Bear Facts,” a novelty stationery-book company whose name and trademark she acquired in June, together with a five-year option to buy the copyright on “The Bear Facts of Cooking.”

When she has the money, she plans to expand the line, with its whimsical drawings of little brown bears. “Why do anything small?” she asks. She talks about bear videos, bear puppets and small-format “The Bear Facts” books. What about, she muses, “The Bear Facts of Managing Stress,” “The Bear Facts of Surviving an Earthquake . . .”?

“The Bear Facts of Surviving Personal Tragedy?” Phyllis Reusche pauses a moment, to think about that one.

Then she says, “I would say things like feelings are real, and you can’t deny them. I can remember times when I felt so sad that my fingertips hurt. But you have to let yourself experience whatever it is. Don’t fight pain. Just feel it. Then let it go. Whatever you feel is OK.”

Sons Were Dying

She recalls how, when her sons were dying, she kept herself “closed up,” unable to tell a soul outside the family. She didn’t want to have to cope with others’ inability to deal with it. And she wanted to appear strong.

But when David died--he was the second to die--she found herself desperately reaching out, talking to the teller at the bank, the woman at the telephone company, the person next to her in checkout lines. “Until I did that,” she said, “I was sick, mentally and emotionally. People who go over the edge are people who won’t talk.”

In “The Bear Facts” of surviving she would tell people, too, that “you have a choice. You can live in the past and suffer and be a victim or you can go on.”