Faith, not 'facts', carries woman forward
By Dan Irwin
NEW CASTLE NEWS (NEW CASTLE, Pa.)
NEW CASTLE, Pa.— Search the Internet, and there are several “80s” that come up in reference to Down syndrome.
Eighty percent of babies with Down syndrome are born to women who are under age 35, the March of Dimes reports.
With recent advancements in clinical treatment, as many as 80 percent of adults with Down syndrome reach age 55, and many live even longer, according to the National Down Syndrome Society.
However, the most prevalent “80” — appearing on multiple sites — is that in America, more than 80 percent of babies diagnosed prenatally with Down syndrome are aborted.
Bobbie McIlwain, though, refused to go along with the crowd. Today, because of her resolve, she and her husband, Jeff, are the parents of healthy 17-month-old twin girls.
During her pregnancy, McIlwain was told that certain test results showed that one of the girls had Down syndrome and that the other likely had a bilateral cleft lip and/or palate.
Despite the fact that she was encouraged to have an abortion, McIlwain and her husband made the decision to continue to carry the twins, then stuck by it.
“I was determined that God had hand picked my babies for me, that these were the ones I was meant to have,” said McIlwain, who, along with her husband, is a member of New Life Baptist Church.
“He must have thought that I was going to be a pretty special mom to give me such a special delivery.”
Once doctors told McIlwain of their diagnoses regarding her unborn twins, they recommended that she and her husband see a genetic counselor, who would tell them about their options.
“Up until the time of my appointment, I kept asking myself, ‘what options?’ ” McIlwain said. “We found out what they were looking for. Our counselor told us that the best option would be to terminate the pregnancy.”
The counselor, McIlwain said, enumerated all the possible consequences of Down syndrome, as well as some of the chromosomal disorders that babies with cleft palates generally face.
“Then she asked us again that, now that we knew the facts, was it still our decision to carry them?” McIlwain recalled. “Absolutely! It took me six long years (because of various health issues) to become a mother. Do you think I was going to give up the first time something difficult was thrown at me?”
Nonetheless, the McIlwains were encouraged to have an amniocentesis, a test that would determine conclusively if one of the twins Bobbie was carrying had Down syndrome. The results, they were told, might make their decision an easier one to make.
However, the McIlwains also were informed that the risk for miscarriage because of the procedure was 40 percent and, because the twins were fraternal and developing in separate sacks, the test would have to be done twice.
“The outcome of the test was in no way going to influence our decision to carry the twins,” McIlwain said. “I declined it again.
“But by this time, I was getting a little upset with the visit. I felt like it was their choice to make, not mine. Finally, I had enough and told them that if this was what a ‘genetic counseling appointment,’ was, well, I didn’t need counseled on abortion, and I wouldn’t need any of the other appointments.”
Apparently, McIlwain is not alone in her feelings.
In a 2005 survey of nearly 3,000 parents of children with Down syndrome, published in the American Journal of Obstetrics and Gynecology, a majority reported that the obstetricians who gave them the diagnosis had focused on the hardships ahead and ignored “the positive potential of people with Down syndrome.”
In response to such reports, U.S. Sen. Sam Brownback (R-Kansas) has sponsored a bill that would require doctors to offer more thorough medical information about Down, as well as referrals to support networks.
For McIlwain, though, the only help available came from her family and her faith.
“I’m not going to lie,” she said. “My decision to carry the babies was easy, but my daily walk was not. I thought if I had to smile at just one more person and tell them I was fine, I was going to pull my hair out.
“You’ll find that everyone has an opinion, and always wants to tell you what is best for you, and what is best for the world. I would just smile, take my little sip of Jesus from my cup, and just say thank you.”
In the weeks ahead, McIlwain said, doctors continued to stand by their diagnosis of Down syndrome, and the news she got with each appointment continued to be dire.
“Finally, I had to tell myself to stop, that this was not going to be a pity party for me,” she said. “I have to remember, ‘Do not tell God how big your storm is, but tell the storm how big your God is.’
“So from that day forward, I refused to let one thing steal my happiness.”
Thus, she said, she went through the rest of her pregnancy “with the most upbeat nature you could think of.”
And the joy only heightened when, on Aug. 17, 2006, she delivered Emily Grace and Ava Marie by Caesarian section. Though Emily came into the world with a bilateral cleft lip and an incomplete palate, subsequent surgeries have corrected the defect.
“Emily was born at 11:20 a.m., and had no other genetic defects associated with the clefting,” McIlwain said. “None. She was, and still is, beautiful. And Ava Marie was born at 11:23 a.m. — with no signs of Down syndrome. She is perfectly healthy.
“She came out screaming because I really think she had something to say to those doctors.”
Now, nearly a year and a half later, McIlwain’s days are full of the responsibilities of both work — she’s employed at Liberty Mutual — and motherhood. However, she’s also got a deeper faith that helps her deal with it all.
“The tests were wrong, the doctors were wrong, the genetic counselor was wrong,” she said of her pregnancy ordeal, “but my God was right.
“If I let him lead, he would show me the way. And he did.”
Dan Irwin writes for the New Castle (Pa.) News.
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Faith, not 'facts', carries woman forward