Welcoming a Baby With Special Needs

by Ann Douglas

littleIt's a subject that pregnancy books tend to gloss over and prenatal classes frequently choose to ignore -- the possibility that you might give birth to anything other than a picture-perfect baby. Consequently, those couples that do end up giving birth to babies with special needs can find themselves feeling shocked and alone.

That was certainly the case for Monique Gibbons, 28, whose second child, Maddy, was born with Down Syndrome and a related congenital heart defect ten months ago. Monique recalls what those first few days were like as she struggled to come to grips with this unexpected development:

"I thought the world had crashed around me and I felt helpless. We had no inkling of her condition during our pregnancy and in one day we were informed that our daughter would not be the baby we had expected [a "perfect" baby] and, what's more, she was going to require open-heart surgery. It was heartbreaking at first as we didn't know what to expect with the Down syndrome.

My advice to other parents who've just been faced with a scary diagnosis like this would be to try not to draw conclusions about your baby's diagnosis without researching what the condition really means, and to keep in mind that the condition, in all likelihood, will be different from child to child."

Like many couples that welcome babies with special needs, the Gibbons had to contend with their daughter's extended hospitalization. While Monique commuted to the hospital to be with her daughter most days, there were times when she needed to take a break from the NICU environment. Because she couldn't bear the thought of Maddy being there on her own, Monique arranged for her mother to go and spend some time with the baby on days when she was taking a break. "That helped to ease my guilt a little, knowing that my mom would be there."

Another key challenge that the Gibbons faced during their daughter's early weeks of life was dealing with the reactions of other people. While family members have been generally very supportive, Monique has been shocked by the reactions of some of the strangers she encounters while she's running errands with Maddy in tow.

Her message to these people is simple, yet direct:

"I wish that other people would accept Maddy for who she is rather than just focusing on her Down Syndrome -- that they'd realize that a baby with special needs is a baby first and foremost. The condition is a secondary thing. I wish people would realize that parents love their children unconditionally and want society to accept their children for who they are. Every child is special, no matter what his or her limitations. A child with special needs is of no lesser value than any other child."

Useful web sites:

National Down Syndrome Society
March of Dimes
Canadian Organization for Rare Disorders

Ann Douglas is the author of numerous books about pregnancy and parenting including the bestselling "The Mother of All Pregnancy Books." She regularly contributes to a number of print and online publications, is frequently quoted in the media on a range of parenting-related topics, and has appeared as a guest on a number of television and radio shows. Ann and her husband Neil live in Peterborough, Ontario. with the youngest of their four children. Learn more at her site, having-a-baby.com.

Copyright © Ann Douglas. Permission to republish granted to Pregnancy.org.