First The Joy, Then The Heartache Parents Learn How To Deal With Birth Defects
It is something every pregnant woman can’t help but imagine: At the moment of birth, the doctor scoops your baby into the arms of specialists, not into yours. The room buzzes with whispers instead of congratulations, and your husband’s eyes brim, but not with tears of joy. Something is wrong.
It happened to Dottie Robison of Sudbury, Mass.
Her second-born daughter, Amy, now 14, has Down syndrome. “They wouldn’t let me see her,” Dottie says of that moment. “I thought she had died.”
Having had an emergency C-section, Robison was whisked to recovery not knowing what was wrong. When she learned two hours later that her baby was alive, she cried with relief and joy, punctuated, no doubt, by the memory of a stillbirth six years earlier. She remembers telling herself, “I can handle anything if this baby is alive.” Three hours after that, however, she wasn’t so sure. Holding Amy for the first time, seeing her almond-shaped eyes that distinguish the syndrome, her tears were bitter.
“I kept saying, ‘This is not what I expected, I’m so disappointed,”’ Robison remembers.
As disappointments go, this is among life’s biggest.
When parents learn their baby has a life-altering or life-threatening problem, the world changes. “This is not like getting a boy instead of a girl, it’s not just that this baby isn’t what you expected,” says Rich Robison. “It’s your future. Any ideas you had about it don’t count now.”
There are no formulas to success for families who face news like this, no how-to’s for coping. The terms researchers use to identify parents’ experiences - “The Rubberband Cycle,” “The Roller Coaster” - capture just how unpredictable emotions are.
Yet there are guidelines.
No matter what the disability or illness, or whether you learn of it during pregnancy, at birth or months later, “Parents do better if they start by acknowledging their loss. They need to grieve over the child that might have been,” says Angela Bloyd. A parent consultant with First Steps, Kentucky’s early intervention system, Bloyd works with parents like the Robisons and is a special needs parent herself: Her son, Jacob, 3, was born with a rare bone disease and will never walk.
Parents also do better if they get support and information immediately, according to clinical psychologist Stanley Klein, founder and co-editor of Exceptional Parent magazine.
This can be tricky: “You need to grieve at the same time you need to start to love the baby you have,” says Klein. “You need contact with other parents in similar situations to validate feelings and know you aren’t alone, but not to compare.
“You need to get information, even though you don’t have a complete or accurate diagnosis.”
For the Robisons, grieving began immediately.
Dottie says, “The pediatrician stayed with us for hours that first night and kept saying, ‘You have to get these feelings out. It’s OK, what you’re feeling.”’ Not only that, but the pediatrician arranged for parents of another Down child to visit them in the hospital.
“On an intellectual level, at least, we began taking in information pretty quickly,” says Rich. That was important, he adds: “We had a lot of prejudices and stereotypes.”
Emotionally, they fared less well. For the first two weeks, Dottie cried “just about every day, all day.” Then, she says, “I started to have good days, when I could be hopeful about her future.”
Rich remembers being numb for nine months, living from one medical crisis to the next.
“One day I just emerged,” he says, probably because “Amy started to do normal things, rolling and picking up her head.”
Although the Robisons did not experience much anger, many parents do, says Nancy Miller, a social worker who works with special needs families at the UCLA Hospital Clinic. She is author of “Nobody’s Perfect: Living and Growing with Children Who Have Special Needs” (Paul Brookes Publishing, 1994).
Anger is often different for mothers and fathers.
“The typical mother … tends to blame herself and feel guilty,” says Miller. “She becomes overly responsible for the child’s care, thinking no one else can do it right.”
Fathers, on the other hand, “tend to need a special invitation to be involved,” says Klein.
“It’s not that dads aren’t interested, but that they aren’t sure what their role can be.”
Unable to express his helplessness, the typical father focuses on something concrete, usually financial security, and distances himself from day-to-day care.
This dynamic can set parents up as the object of each other’s anger.
“From the beginning, a mother needs to fight this feeling that only she can do it right,” advises Miller, and fathers need to push themselves to be involved.
It is also out of guilt that many mothers quit jobs outside the home to be with their baby. Miller doesn’t recommend it.
“It can be really important for a mom to keep that part of her life,” she says, if not for finances and her own mental health, then for her child’s: Mom going to work may be one of the few ways in which a child has the chance to separate.
“A disabled child still has the developmental need to separate, just not much opportunity,” says Miller. “If he can’t crawl, which is usually the first experience at going away from you, then you need to set up situations so he gets the sense of not being glued to your side,” she says.
Perhaps the most powerful feeling of anger is the one parents are most afraid to express: “I wish he’d never been born!”
Bloyd is upfront about telling parents that she has those thoughts herself.
“It’s normal,” she says. “All parents think that at some time. Parents with a special needs child don’t take it in stride because they’re ashamed to have thought it.”
Such thoughts often come from not wanting your child to suffer any more, or from feeling inadequate.
“You’re more vulnerable to thinking you’re not a good parent because you often don’t know what you are doing,” says Klein. “Plus, you don’t get much feedback from your child to make you feel good as a parent.”
In addition to feeling anger, parents can run a gamut of other emotions, says Bloyd, who goes through periods of isolation, where she and Jacob never leave home.
“I feel like I have to protect him from people,” she says. Other times, she is more hopeful and realistic: “I find a strength I didn’t know I had.”
Miller says it can take six months to four years before parents feel a sense of control about their lives, and a medical crisis can set them back all over again: “The peaks and valleys on the roller coaster begin to even out, but they’re still there.”
Klein calls this chronic sorrow.
“It’s like a wound. It heals and you’re OK, but that area is more sensitive,” he says. For these parents, the wound reopens around developmental milestones, things your child can’t do that age-mates can.
Parents of special needs children are always searching, according to Miller.
“In the beginning, it’s survival: What does my child need medically, therapeutically? As things settle down, you search for support, education, friendships.”
Somewhere along the line, she says, parents also engage in an inner search: “You begin to ask deep, soul-searching questions about the meaning of life.”
Rich Robison certainly has. A full-time American Baptist minister until 6-1/2 years ago, he says, “Having Amy has helped me resolve intellectual and theological questions,” particularly the classic: Why bad things happen to good people.
The answers have led the Robisons in unexpected directions, to unanticipated rewards.
Two years after Amy’s birth, they adopted a third child, Jason, also with Down syndrome. When Rich gave up his congregation in Brighton, Mass., it was to take a job as director of community relations for the state Department of Mental Retardation.
About the same time, Dottie became a research associate, specializing in mental retardation, at Brandeis University’s Heller School. Both have become activists, helping to establish a Massachusetts chapter of the Down Syndrome Congress, and Dottie helped found Parents’ First Call, an informal network of parents of Down children.
Although the couple still have moments of grief, it’s no longer because they feel sorry for themselves but because it hurts to see Amy or Jason face disappointment.
“Amy talks about wanting to be a doctor,” says Dottie, “and I feel a pang of pain that that isn’t possible, that life will always be a struggle for her.”
Dottie says she’s successful as a parent because she isn’t looking for ways to compensate for Amy’s disability.
“She’s perfect, just the way she is,” she says.
Rich adds: “She’s such a neat person. I wouldn’t change a thing about her.”
xxxx Suggestions for parents offered Even a child hooked up to machines needs the autonomy that can come from having caregivers other than his parents. Many doctors present overly pessimistic diagnoses to cover their bases. Others don’t tell everything they know because they think it’s too upsetting. Professionals recommend telling your doctor you would like as complete a diagnosis as possible, with the range of possibilities, knowing the situation could change. Federal law mandates that each state has early intervention programs for special needs children. In Spokane, for children from birth to age 3, contact the Infant-Toddler Network of the Spokane Public Health District, 324-1651; for children 3 to 18 years old, call the same number for referral service. In Idaho, call the Panhandle Health District at (208) 667-3481 and ask for the nurse on call. Exceptional Parent magazine publishes a Resource Guide ($9.95) that lists 1,300 resources nationwide, including parent support groups. Call (800) 247-8080. The range of emotions commonly felt by parents includes: panic and anxiety; depression; shame and shock; denial; guilt and anger; and hope, adaptation and adjustment. Extended-family members often need support, too. If you feel as though you and members of your professional support team have become adversaries, ask yourself whether you’re taking your anger out on them. Staff and wire reports