Stacy’s Story: Trisomy 18 | Talking Trisomy

Sent Home with No Answers and a Daughter Who Did Not Read the Textbook

In 1981, Barb and Dave VanHerreweghe of Brockport, New York, waited two months for test results after their daughter Stacy was born small and struggling to eat. When the call finally came, Barb was told to come in alone — her husband could not make it — and to bring someone with her.

She walked into that appointment at three months old and was told Stacy had Trisomy 18 (Edwards syndrome), and that she had already outlived her life expectancy. The doctor's advice was simple: take her home and love her.

There were no brochures. No internet. No SOFT. Just a diagnosis and a drive home.

Stacy did not listen. She went on to live 36 years, travel the country, attend SOFT conferences from Utah to Seattle, appear at the American College of Medical Genetics, and become known by name at the Victoria's Secret Pink store in two different malls. She owned 52 pairs of sneakers. She held everyone's hand and would not always let go.

The Phone Call That Changed Everything

A few months after Stacy's diagnosis, Barb heard about an organization called SOFT from another family she met through early intervention. When she called her cardiologist about it, she was warned away — told it was a radical organization not worth getting involved with.

Barb called anyway. And the person who picked up was Kris Holladay.

That one phone call set the course of Barb's life. She became a cornerstone of SOFT for more than four decades, eventually serving as president, co-organizing two SOFT conferences in Rochester, and helping families across New York State navigate systems, waivers, and a medical world that had not yet caught up to children like Stacy.

"Radical," Barb laughs. "That's the best description of SOFT anyone has ever given."

Ten Pounds in One Month and the Decision to Let Her Live

At five years old, Stacy weighed nineteen and a half pounds. After years of careful syringe feeding and watchful waiting, Barb finally decided to pursue a G tube. It was one of the best decisions they ever made. Stacy gained ten pounds in her first month.

With her health improving, the VanHerreweghes took the next step: they enrolled Stacy in school. Every toy came home weekly to be washed and sanitized. Every visitor was checked at the door. If you had even a sniffle, you were not coming in.

When Stacy got sick the week before school was supposed to start and her speech therapist suggested pulling her out of the plan, Barb pushed back.

Stacy went to school. She thrived. She was, Barb recalls with a laugh, probably healthier than most of the other kids. She became the first student at BOSEs with a G tube, paving the way for every medically complex child who came after her.

Andy: The Brother Who Roughed Her Up and Loved Her Fiercely

Andy VanHerreweghe was born about a year and ten months after Stacy. He grew into a broad-shouldered, six-foot-something man who never once saw his sister as a diagnosis.

He wanted Stacy at his high school football games in Rochester's November cold. He lifted her onto airplanes and cruise ships. He never left the house without going over to say goodbye and giving her a hug and a kiss. That was all on his own — nothing his parents asked him to do.

And every single time he walked through the door, he would go over to her wheelchair and start shaking it, moving her around, roughing her up. Stacy would belly laugh every time.

Stacy Goes to Utah. Then Everywhere.

Barb attended her first SOFT conference alone — too uncertain to bring Stacy all the way to Utah, and not sure what to expect. It was the best experience of her life. She wished she had brought her daughter.

The next year Stacy came. And after that, she came to every conference until Seattle in 2016 when she was too sick to travel. She knew people at every conference that Barb did not know. She would hold their hand and would not always let go.

But conferences were just the beginning. Stacy also attended the American Society of Human Genetics meetings and the American College of Medical Genetics. Dr. John Carey had the idea: why keep her in the hotel room? She was one of the oldest surviving children with Trisomy 18 (Edwards syndrome). Let people see her.

At one conference, a Japanese physician from across the room locked eyes on Stacy, walked over, and could not believe what he was seeing. He asked if he could take her photo back to Japan to show families there. They became friends. Stacy's picture appears in his book on Trisomy 18 in Japan.

The Pink Army, 52 Pairs of Sneakers, and a Life Well Lived

Stacy was a pink girl. Pink wheelchair. Pink stroller. Pink outfits head to toe. The staff at Victoria's Secret Pink knew her by name at two different malls. She had 52 pairs of sneakers when she passed. Her granddaughter Andrea has been working through them ever since.

Walk through any mall with Stacy and people would say hello who Barb and Dave had never met. She held everyone's hand. She made her own friends. Nobody had to teach her how. She had a boyfriend. She went to a Barry Manilow concert. Toby Keith was her favorite.

And she changed things. She was the first child with a G tube in the school system. She helped open a Medicaid waiver in New York State that had required 30 days of hospitalization — Stacy had never been hospitalized for 30 consecutive days, so she could not qualify. Barb pushed until a new pathway was created. Stacy was among the first children on it. Barb filled out the paperwork in purple pen.

What Barb Wants Families to Know

If you have just received a Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome) diagnosis, here is what Barb VanHerreweghe — who has lived it for more than four decades — wants you to hear.

There is always hope. Give your child a chance. Build a medical team that treats your child as an individual, not a condition. You may have to search for them. You may have to fire a doctor along the way. Do it kindly. That team exists.

Write everything down before every appointment. If you can't say it, your partner can. If they can't, your nurse can. Take someone with you who can speak when you cannot.

And then open your heart. The community you will find — in SOFT, at conference, in hospital waiting rooms, in online groups — will change your life. It changed Barb's. It changed Stacy's.