Pia K. Hansen: Doctor’s encouraging words still cherished

When Helen Black was pregnant with Anthony she knew something wasn’t right. There was no feeling of doom, yet she kept going back to her obstetrician saying, “Something is wrong, something is wrong.”

She should know: she’d already had seven children.

“I had some issues with preterm labor, but with Anthony that didn’t happen,” Black says. “I can truly say he was my easiest pregnancy.”

The challenges came once Anthony was born.

“One doctor thought perhaps he had Noonan Syndrome, when I looked at Anthony and said, ‘do you think he has Down syndrome?’ The doctor said no,” Black explains.

What Anthony did have was a heart defect.

“He had what’s called a coarctation. His aorta was 70 percent closed off and his kidneys were already shutting down, when we figured this out,” Black says.

Anthony made it through surgery just fine.

“He was recovering, we were celebrating that, and then boom, that’s when we were told he has Down syndrome,” Black says. Reeling from the high of childbirth to the terror of sending your new baby into heart surgery, the news was almost too much to handle.

“Fortunately for us, our pediatrician said, ‘Your baby will bring more love and joy to your family than you can imagine,’” Black says. “It still makes me cry to this day. I’m so glad we didn’t have a pediatrician who felt sorry for us.”

Black turned to the Spokane Guilds’ School for support, where she now volunteers. Her next goal is to bring the Buddy Walk to Spokane in 2009.

“It was started back East in ‘95 and it’s basically an event created to build awareness of people with Down syndrome,” Black says. Seattle, Bellingham and Cashmere are among other Washington cities with a Buddy Walk. In Idaho, the annual walk is held in Boise.

Black is hoping the Buddy Walk will help the local Down syndrome society raise money so more information is available for new parents.

“I’d love to see a package of material at the hospitals or the pediatricians’,” Black says. “And I’d like to see a parent support group first and foremost for new parents.”

Parents of Down syndrome children often struggle with a variety of emotions — some they may be ashamed of sharing.

“There’s nothing better than meeting other parents that are in the same boat as you,” Black says. “The feelings you have are all perfectly normal. You are mourning the loss of the perfect baby you anticipated. You think, ‘We want this child but we don’t want the Down syndrome part of it,’ and out of fear some parents beat themselves up. All those feelings are perfectly normal.”

Today Anthony is 4 years old and a total boy.

He’s got some turf to protect considering that his eight siblings are all girls – Rachel is the youngest at 10 months and Kiersten is the oldest at 18 years.

“It has been a big challenge,” Black says about bringing a special-needs baby into an already big family. “We have to make sure the other children don’t go without, that they get to do sports and other activities. It’s tough.”

Black, 42, became a stay-at-home mom when she was pregnant with her fifth child. Her husband Don, 48, works in management for Burlington Northern.

Anthony has grown into a little boy who loves “fish crackers” – goldfish crackers – and enjoys toy cars.

“When I first gave him a car, he put it on the floor and started making car noises,” Black said. “When the girls play with the cars, the cars have personalities and play house together.”

Anthony recently started soccer as well.

“It’s just such a joy to see him run and kick the ball,” Black says.

Is she expecting any more children?

“No, we’re done,” Black says, laughing. “I promised my oldest that I won’t show up at her high school graduation pregnant.”