Saturday, October 18, 1997

Kids with special needs put family's faith to the test

By SHARON TUBBS

St. Petersburg Times

ST. PETERSBURG, Fla. - A minister stands before the congregation at St. Paul United Methodist Church, delivering the word of God.

Dennis and Donna Douglas, the popular couple who met in the choir, are ready to receive it. The pews are filled with worshipers this morning, but this sermon finds the Douglases and taps on their souls.

"Each of us has storms," says the Rev. Jamie Westlake, speaking from the passage in the book of Mark when Jesus rebuked the stormy wind. "Jesus Christ promises that he will walk with us through the storms that are raging in our lives every day."

The Douglas storms are raging.

They have three sons: Matthew, 7, Andrew, 5, and Stephen, a year old. All suffer from hydrocephalus, a condition also known as water on the brain.

Each of the Douglas boys has some degree of brain damage and stifled motor skills. Matthew and Andrew can't walk and speak few words. Like their baby brother, Stephen, they wear diapers. Their limited speech makes it difficult to tell how much they understand.

Doctors first diagnosed the disorder in Matthew through an ultrasound test, just days before he was born. They thought his case was random, as most hydrocephalus cases are.

Not until after Andrew was born did geneticists tell the Douglases that their sons' condition was probably the result of an irregular gene Donna carries. The gene can cause a rare and severe form of water on the brain in boys that is passed through their mother. The condition, which is called X-linked hydrocephalus because it is linked to the mother's X chromosome, can result in death.

Both Dennis and Donna Douglas were raised on Scriptures and hymns. They know the Good Book talks of mercy everlasting, but it is now a challenge to believe when the choir sings, "God is good all the time."

At least on this bright Sunday, the refrain rings true. Stephen is snug in the church nursery. Matthew sits quietly in his father's lap and gazes at the chandeliers. Andrew squirms and grabs for a hymnal, the Bible, then the offering envelopes, as his mother stashes them out of reach.

You can't see the leg braces the boys wear for support under their pants. You don't know their parents' dashed dreams.

"Sometimes the storm doesn't stop," Westlake continues. "Are you wanting to ask, 'Where are you, God?' "

Dennis Douglas, 39, originally from Dunkirk, a small town in northern Ohio, is a structural engineer for Architectural Concepts in Largo. Donna, 41, was reared in Largo and joined St. Paul's congregation when she was 12. She has been a learning disabilities teacher for Pinellas County schools since the mid-1980s, helping students who have trouble with reading and math.

The couple met in the church choir, married in 1988 and decided to start their family a year later.

"We wanted to have a little boy running around the house," Dennis said, "a 'normal' kid who could go to college."

It was late February 1990, days before Matthew's birth, when doctors noticed an irregularity in Donna's ultrasound test. Before then, there had been no complications in the pregnancy.

Doctors found that her unborn baby had hydrocephalus, a condition in which fluid does not drain properly from the brain. It started in the womb for the Douglas boys.

To correct it, doctors inserted "shunt" tubing devices soon after their births. Shunts drain spinal fluid from their brains to their abdomens. In each of the three boys, some degree of brain damage already had taken place inside the womb.

Shunts allow most hydrocephalus patients to walk and talk normally, said Dr. Louis W. Solomon, a pediatric neurosurgeon who has treated the Douglas children. Experts say that between 2 percent and 7 percent of all hydrocephalus cases are caused by an irregular gene in the mother, and brain damage that begins in the womb among those who have X-linked hydrocephalus may be more severe.

At birth, Matthew weighed 9 pounds 5 ounces. His head was the size of a 3-year-old's, and he was delivered by Caesarean section, as were his brothers.

Matthew stayed at All Children's Hospital in St. Petersburg for six weeks. After a shunt was inserted, he began therapy to relax his hands, which were still balled in fists, as a fetus's are in the early stages. His heart rate dipped when he spit up. A monitor alerted doctors to any lapse in breathing. He was the charm of the hospital nursery, and nurses called him "Little Red" because of his carrot-colored hair.

Once Matthew was well enough to go home, his mother said, they "tried to live like any other couple with a new baby." The nursery was decorated, the baby toys and blankets in place. The only difference was that Matthew went to All Children's twice a week and had six surgeries, including operations to insert the shunt, reconstruct his forehead and correct problems with a lazy eye.

"We still went to the mall, went to church, did all those things that most people just do," Donna said.

And like many other people, they wanted a second child.

Doctors referred the Douglases to the University of South Florida, home of the leading center for genetic studies and diagnosis in the area. It is routine that parents of children born with disabilities go there to determine whether the defects are hereditary.

DNA tests to determine whether Donna carried the gene for hydrocephalus had not been developed when the Douglases came to USF in 1990, said Dr. Boris Kousseff, head of the genetics division. "We didn't have the magic test to say, 'Give me a little bit of blood and let's see if you have this gene.' "

Geneticists could base their diagnosis only on other case studies and the family's pedigree. They ruled Matthew's hydrocephalus a random case because there is no history of hydrocephalus in Donna's family, Kousseff said.

Both Donna's parents are dead and neither had hydrocephalus, nor can she remember anyone in her family having had the condition. She remembers that her grandmother's sister had a disability, but no one in her family knows exactly what it was.

"If you have one child with hydrocephalus, it wouldn't even cross your mind that it was a heredity-related problem," Kousseff said. The overwhelming majority of hydrocephalus sufferers are victims by chance, he said.

The Douglases say they saw doctors who assured them it was likely that future children would be healthy, and they decided to have a second baby. Donna learned she was pregnant in 1991.

The pregnancy went smoothly and without complications until the hydrocephalus showed up in tests a month before Andrew's birth on June 4, 1992. Kousseff's department made the connection to X-linked hydrocephalus based on the fact that the Douglases had two children with the condition.

Doctors delivered Andrew three weeks early to prevent as much brain damage as possible. A shunt was inserted days after birth. He did not have problems with breathing as Matthew had, and he suffered less brain damage.

Donna's third pregnancy was a surprise, and the discovery of it was bittersweet. USF counselors told the Douglases a boy would have a 50 percent chance of having water on the brain. A girl might be a carrier, as is Donna, but she would not have hydrocephalus.

Specialists kept a close watch on the pregnancy, conducting regular ultrasound tests as early as safely possible. By this time, DNA tests to identify the irregular gene were available.

In March 1996, it was confirmed that Donna carried the gene for hydrocephalus. At the same time, doctors determined the baby would be a boy and that the likelihood of his developing hydrocephalus was 89 percent. Doctors raised the issue of abortion, but the Douglases said no.

"I put my faith in the 11 percent that God wouldn't let it happen again," Donna said. "I figured that if he can feed 5,000 people with two fish and five loaves, he can do a whole lot with 11 percent."

About two months later, when doctors told her they could see hydrocephalus forming as Stephen lay curled inside her, Donna says, "I was actually shocked."

Stephen was delivered two weeks early to minimize brain damage and suffered the least damage of the Douglas children.

"The world without Andrew and Stephen, I can't imagine now," Donna said. Still, if they had known six years ago that she carried the gene, the Douglases probably would have opted to adopt or use special in-vitro fertilization methods to ensure they would have only girls after Matthew.

It is difficult to tell how much the boys understand. They communicate with smiles, giggles, frowns. "We know they understand quite a bit by the way they respond to what you ask," their mother said. "If you say 'Push,' they push."

One thing is certain: Matthew and Andrew know what it means to be brothers. "They are very close," Donna said. They sleep in the same room, the wallpaper decorated with trains. Andrew is restless and can't sleep peacefully unless his big brother is lying in the next twin bed. They play together at school, and Matthew sometimes puts Andrew in a headlock and wrestles with him.

Kousseff says chances are slim that the two older boys will walk by themselves. For Stephen, it's too soon to tell. To what degree continued treatment and physical therapy can improve the boys' conditions is uncertain.

"If you're not walking at 7 and 5, it's unlikely that you will," Kousseff said.

Then again, the Douglases say, when Matthew was an infant they were told he would never sit up and might not survive long after birth. He now sits up with help.

Dennis is hopeful. With time and continued therapy, the boys have the potential for recovery, he said. "Something could just trigger, and (Andrew will) start walking next month."

Donna is more cautious. "I never try to look too far ahead because that just sets me up."

St. Paul's senior pastor, the Rev. Thomas Farmer, says of the Douglases: "A family with less faith and dependence upon God could not cope with the pressures and hardships involved with rearing what are three physically challenged children.

"They are an example of Christians in the trenches who do not buckle under great stress and strain."

But the tears do fall.

"It's rough," Dennis said. "Certain songs will get to me, or seeing another couple with a 'normal' child."

A group for parents with hydrocephalic children meets regularly in St. Petersburg. The Douglases set out to go a few times, but it became too much of a hassle with getting the boys ready for a babysitter and the long drive. "I was worn out before we even got out the door," Donna said.

Private counselors have helped. Since Stephen's birth, Donna has suffered from postpartum depression and regularly sees a counselor. Dennis goes sometimes, too. Prayers from friends and church members are also a comfort. Dennis' parents, who live in Ohio, visit often.

The church has been a shoulder for Dennis. Donna, on the other hand, is in what she calls a "questioning period." She doesn't feel as comfortable in church as she used to and has been to services only sparingly since Stephen was born.

Oh, she still knows the Lord, knows who is her Savior, Donna said. "But there are times when I keep saying, 'Why is God punishing me through my children?' " she said. "I'm not saying God did this to my kids, but he could have prevented it."

At other times, she blames herself. "It's my gene," she said. Once, she offered Dennis a divorce. If he wanted, she would set him free to find somebody who could give him "normal" children.

Dennis wouldn't have it. "God put us together," he told her. He accepts his family situation as the work of God. He and Donna simply were chosen to parent these "three special kids," he said.

"We have happy kids, we have good kids," Donna said, "even when they're sick."

On this particular Sunday, the Douglases wave and nod to fellow church members. Most see Dennis every week. He's either singing in the choir or sitting among them in the pews. He takes turns bringing Matthew and Andrew with him.

It is the first time in months Donna has been to church. She hugs friends whom she used to see at church activities, meetings and practices at least three times a week. As one woman's eyes fill with tears of apparent sympathy, Donna smiles and hugs her, as if to reassure her that everything will be all right.

And Westlake continues the morning's lesson. "They come with surprise," he said of life's storms. "They take hold of us, they grab us. . . . He'll either calm the storm, or he'll be with you through it."

There is talk of expanding the Douglas family. Dennis admits that the thought scares him a little, having a fourth child when they already have three with special needs.

Donna is looking into in-vitro fertilization techniques that could ensure their next child would be a girl.

(Distributed by Scripps Howard News Service.)