‘Everything they said turned out wrong’: mother of 8 recounts pressure to abort disabled daughter

September 12, 2011 (rtl.org) - Pregnancy was a natural and normal part of life for Bernadette and her husband Phil. After having seven children, the Grandville, Michigan couple thought their family was complete, but the couple received a surprise when they found out they were expecting their eighth child, Hannah.

Bernadette and Phil with their daughter Hannah

Though the pregnancy was unexpected, Bernadette and Phil were happy to be blessed with another child. But during the first ultrasound, the routine of another otherwise uneventful pregnancy was replaced with anxiety after the surprised sonographer left the room to consult with a doctor.

“What I see is not good,” the doctor told the Smith’s after looking at the screen.

Bernadette said the doctor needed her to make an appointment with a specialist to see what the problem was, but he didn’t give them any details. While parents are not prepared to hear a troubling diagnosis for their child, Bernadette and Phil were even more unprepared for how differently this pregnancy would be treated than the first seven.

The building that housed the specialist was the first sign of trouble in Bernadette’s eyes. She said she clearly remembers how obscure the office building looked as they walked in, and said she felt very unsettled from the beginning.

“It didn’t feel right, that’s the only way I can express it,” she said.

After a long series of questions probing their health, eating habits and family history, the Smith’s finally received a diagnosis for Hannah: Trisomy 18. The genetic disorder, also known as Edward’s Syndrome, is caused by an extra copy of a chromosome in a person’s DNA. The disorder can cause several types of birth defects, and according to the National Institutes of Health, only half of unborn babies diagnosed survive the birth process, and those who do survive have an extremely poor prognosis.

Bernadette with Hannah.

Bernadette said the specialist told her that Hannah had a grim outlook and would either die during the pregnancy or would die shortly after birth. The specialist told the couple bluntly that they had a “choice” to make. Bernadette said that though the specialist didn’t mention it, everyone in the room knew that “choice” meant abortion. Phil said very clearly that they would not abort their child, but that was not good enough for the specialist.

“Then the specialist said to just me, ignoring Phil, ‘You have a choice to make,’” Bernadette said.

Fortunately for Hannah, Bernadette and Phil both strongly believed in the right to life for all unborn children. Being firm in their convictions didn’t make it any easier, however, when the specialist continued to badger them about making a “choice.” Bernadette said the doctor told her that with seven children who needed her it would be wrong for her to be spending time in the hospital dealing with a miscarriage.

“Fear tried to grip me, but I did not receive those words,” she said. “I heard a voice say ‘you can choose to fight.’”

Bernadette said she continued to feel embattled by medical professionals throughout and after the pregnancy. She said even her obstetrician seemed like he didn’t want to deal with the situation, and had to be convinced to carry on as Hannah’s doctor. Bernadette developed a constant refrain, “she will live,” to counter all of the negativity.

Despite the prognosis and pessimism, Hannah was born on June 19, 2007. Doctors had said Hannah would likely die before birth, but she was born a week late during a caesarean section. Hannah wasn’t breathing at first, but Berndatte’s faith that Hannah would live continued.

The Smith’s experience with medical professionals wasn’t completely sour. As Hannah was lying in intensive care, the hospital was very reluctant to let them take her home. Fortunately, Bernadette was able to befriend some nurses and even led Bible studies with them while recovering in the hospital from the birth. One nurse in particular promised Bernadette she would help her bring Hannah home. She also received support from her own doctor after Hannah was born.

“Our family doctor was good through it all, he was the encourager,” she said.

Years after the birth, Bernadette ran into one of her former nurses. She said the nurse was very tender, thinking all the predictions of Hannah’s fate had come true, but was shocked to discover how it turned out. Now, four years later, Hannah is a joy and constantly laughing, Bernadette said. Hannah has had several problems, including a hole in her heart that eventually healed and difficulty walking and talking on her own, but she’s a smart little girl who is most definitely alive.

“Everything they said turned out wrong,” she said. “What if I had an abortion?”

Bernadette said she thinks the doctors who were being pessimistic throughout the pregnancy thought they were trying to help. She said they refused to believe that Hannah had any hope, and thought a child with disabilities was too much for her family to handle despite their faith that God would see them and Hannah through.

“They were not happy with me because I didn’t do what they wanted me to do,” she said. “They thought I was in denial.”

Bernadette is emphatic in her desire to help others facing crisis pregnancies, and is working on a book to tell her full story. She said the most important thing for people facing a troubling prenatal diagnosis is to not listen to those preaching doom, and to never give up hope or faith in God.

“Your baby can make it, your baby can live,” she said. “Do not give this baby over to death.”

There is hope and help for women and families facing an untimely pregnancy or difficult diagnosis. For a list of pregnancy support services, call 1-800-57-WOMAN to be connected to a local center or click here for an online listing.

Now I had a very rough pregnancy with him. I bled a LOT. The placenta would start to bleed, then a blood clot would form between it and the uterine wall. This threatened the attachment and any movement would start the bleeding all over again. When this happened, I’d be hospitalized and catheterized for a couple of weeks so that I could be as still as possible until the clot dissolved and the placenta reattached. (I lost count, but I think it was four or five hospitalizations. It’s all a terrifying blur to me now.)

I was on bed rest for six full months of the pregnancy. The dr. gave me magnesium to stop contractions. When we made it to full-term it was a miracle.

My son was diagnosed with T1 right after he turned ten years old. One of my friends, who knew how rough the pregnancy was sympathetically said, “Oh you poor thing! I’ll bet you wish you’d let nature take it’s course while you were pregnant.”

Uh... no. No, I don’t. Even if he dies at 30, his is a life worth living. He’s a very good person and there are many people who’s lives have been made better for having known him. He’s loving and friendly and the happiest person I’ve ever known. He keeps tools in his car just in case he comes across someone who’s broken down and, at least once a month, he manages to patch someone’s car/truck up enough for them to get to their destination. He’ll bleed for family and strangers alike. Last month, when a fire started in our valley, he was on the front lines with the fire-fighters, desperately trying to save our homes. (Incidentally, that inspired him and he just joined our volunteer fire department. he starts training in three weeks.) I’ve never met anyone who’s more in love with life.

And I think that part of that is because he knows that he probably won’t get the full 80 years.

I’ve always said that, in our family of four, my husband, daughter and I are the meat and potatoes. He’s the spice. We’ve all agreed that our family would be VERY boring without him as a part of it.

Sometimes it’s the shorter life that shines the brightest.

Sorry to go off, but I get so mad when our most vulnerable are treated like garbage. So many times, they’re better than the average person.

I believe that we agree to our lives before we’re born. G-d didn’t force us into our situations. And I think that those who intentionally agree to come here crippled, hobbled, slowed down - well, they’re the bravest among us. They’ve agreed to sacrifice to give *US* the opportunity to express compassion.

We should be grateful for their existence and treat them well. With that, our own souls are elevated.

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