Parents of children with disabilities now have a resource

Lisa Johnston | lisajohnston@archstl.org
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Thirty two weeks into her pregnancy, Crystal Maynard received worrisome news.

A prenatal care visit revealed that her unborn son, Jace, had myelomeningocele, a form of spina bifida in which the spinal cord and spinal canal do not properly form.

"I Googled about 80 million articles," she recalled after learning the news. "My entire world changed in just one day."

The pregnancy was unexpected, and she looked to Birthright for extra support. She was caring for her husband, Josh, who was out of work and had a broken foot and other health issues. The couple also has one other son, 5-year-old Dalton. Maynard had become the sole financial provider for the family, and she was plain stressed out.

As she was getting life back on track with the help of Birthright, the pregnancy counseling organization debuted a program to provide financial and emotional support to parents who learn that their baby will have disabilities. The Melissa's Smile Assistance Program was named in memory of Birthright executive director Maureen Zink's daughter, Melissa, who was born with disabilities and was known for an infectous smile. She died in September 2016 at the age of 27.

Melissa's Smile supports parents who have received a diagnosis of disabilities before or at birth. Funds may be used toward parents' basic needs while they are out of work for an extended period or can be used toward the children's special needs, such as equipment, therapies, education programs or transportation to see specialists — oftentimes things that that insurance might not cover.

The program has assisted Maynard with rent, freeing up resources to help pay for Jace's therapies, which he receives several times a week. She meets with a Birthright social worker, and has discovered it's better to not worry about the things over which she has no control.

"Before I had Jace, my mindset was different," she said. "I felt I needed to be in control of every little thing. Now I have a better focus on my family."

As prenatal testing is offered earlier in pregnancy to look for potential disabilities, discussion of abortion often comes sooner.

"In the medical world, if there's a disability involved, terminating a pregnancy is offered as an option," Zink, the director, said. "Women can really get overwhelmed. There's a lot of grieving that goes on with the realization that your child has a disability. And obviously there can be a lot of stress that goes with parenting a child with a disability. All of that is a recipe that 'I don't have to do this.'"

Genetic counseling often is offered as part of the health care, but it's purely medical, Zink said. The one-on-one professional counseling that Birthright provides helps parents with the emotional side of caring for a child with a disability. "Birthright is a place where they can come and talk about how they're coping with this information and what they're thinking," she said.

Ultimately, women don't want to choose abortion, Zink said. When they do, it's because they're overwhelmed by life's circumstances, such as finances, lack of a support system, education and career path.

Maynard teared up thinking about those women who have chosen abortion when they found out their child was likely to be born with a disability.

"They miss out on something fantastic, something spectacular," she said. "Jace is perfect in every way. How many women have missed out on that because they were scared?" 

Melissa's Smile Assistance Program

Donations may be to the Melissa's Smile Assistance Program online at www.birthrightstl.org.

Or send checks to Birthright Counseling St. Louis, 2525 S. Brentwood Blvd., Suite 102, St. Louis, Mo., 63144. Designate Melissa's Smile on the memo line.

Donations are tax-deductible. Donations of $100 or more may qualify for the Missouri Pregnancy Resource Center Tax Credit, which provides a tax credit equal to 50 percent of the donation. 

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