Parents of Severely Disabled Kids Say They Enrich Their Lives

Families dealing with trisomy 13-18 face grim predictions, turn to online support, study found

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That sentiment isn't unusual, said Barbara Farlow, a study co-author and mother of nine from Toronto who gave birth to a daughter with trisomy 13 in 2005. The condition was detected by a prenatal test at 21 weeks. An engineer and financial analyst, Farlow considered terminating the pregnancy -- she had a busy life with five typically developing kids who excelled in school and sports.

But she and her husband researched the condition. They chose not to terminate after meeting families who had children with the same diagnosis, and seeing the love they had for their children.

"Doctors have controlled all the information about these conditions. Many would say, 'Your child will be a vegetable. This will ruin your life. Your child will live a life of suffering, and parents made decisions based on that," Farlow said. "A lot of people equate disability with suffering. Not necessarily 'pain' suffering but if you can't do what other people do, then you're suffering."

"With the Internet and the development of online parent support groups, parents have been able to acquire a different view than what the doctor described to them," Farlow said.

Farlow's daughter, Annie, lived 80 days. During her life, she helped teach the family compassion, patience and to appreciate every day, Farlow said. "Before you're in this type of situation, it's easy to make a passing judgment about what lives are worth living," she said. "That changes when you have a life placed in your hands."

The stories of these families are uplifting, and give pediatricians and parents facing difficult decisions a point of view many may not have considered, Samuels said. But it's also important for families to realize that caring for a child with trisomy 13 and 18 is a tough road, financially and emotionally for parents, while children may be in and out of the ICU. And though some kids beat the odds, many parents of children with trisomy 13 and 18, which involves an extra copy of chromosome 13 or 18, face the grief of burying their child.

"We have children with these conditions, and the parents go through hell at times," she said.

Those sorts of worries don't escape Hernandez, who lives on Long Island, N.Y. She urges parents to reach out to online support groups like the one she runs, Living with Trisomy 13. At least 18 other such groups exist, according to background information in the article.

"I don't want to tell anybody any pipe dream. It's not all sugarplum fairies. The first year my other children basically didn't have parents. My house didn't get cleaned and the laundry didn't get done. It was all about Isabel," she said. "But we want people to know the real story. To give them both sides, and let them make a decision. Don't try to scare them into something."

"My life is better because of Isabel. All of our lives are better because of her."

More information

Lucile Packard Children's Hospital at Stanford has more on trisomy 13 and 18.

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