MN bill would help families of babies with chromosomal disorders

| January 14, 2015 | 7 Comments

Families prepare  for birth and life of babies diagnosed with chromosomal disorders

Kelly and Justin Hodges hold their 3-month-old daughter, Madeline, who was born with Trisomy 21, also known as Down syndrome, on Oct. 16. The Hodgeses are parishioners of St. John the Baptist in New Brighton. Dave Hrbacek/The Catholic Spirit

Kelly and Justin Hodges hold their 3-month-old daughter, Madeline, who was born with Trisomy 21, also known as Down syndrome, on Oct. 16. The Hodgeses are parishioners of St. John the Baptist in New Brighton. Dave Hrbacek/The Catholic Spirit

As difficult as it was for Kelly and Justin Hodges to learn that their baby would be born with Trisomy 21, the information and support they received upon diagnosis and throughout the pregnancy was crucial. Without it, Kelly says, their family would have been unprepared to deal with the stress of the diagnosis in addition to the birth of their baby.

“The emotions you have when you find out, you don’t want to have right after you have the baby,” said Kelly, who gave birth to Madeline Oct. 16.

The Hodges family found out early in the pregnancy that Madeline would have Trisomy 21, also known as Down syndrome, a genetic chromosomal disorder that causes intellectual disability and developmental delays, and in some people, health problems. Following Kelly’s first appointment at 10 weeks of pregnancy, a series of concerns prompted her doctor to order a specialized ultrasound. It showed a hole in Madeline’s heart, no nasal bridge and undeveloped lymph nodes — meaning there was a one in 70 chance she had Down syndrome. The Hodgeses then met with a genetic counselor, who provided information about Down syndrome and shared the experiences of other parents who considered having a child with the condition a blessing.

“Everyone was positive,” said Kelly, who with her family attends St. John the Baptist in New Brighton. “The information helped get past the diagnosis and have her arrive healthy. It gave us a lot of hope for her and what her abilities could be.”

That same support is what Janelle and Ben Gergen sought upon the Trisomy 18 diagnosis of their son, JohnPaul. But rather than being equipped with information, the Gergens, who also have a 7-year-old son and live in the Diocese of Crookston, spent most of the pregnancy advocating for their son when the health system pushed back. They learned that in the last 25 years, the hospital had only seen four cases of a prenatally-diagnosed trisomy.

Because Trisomy 18 is a severe chromosomal condition, the Gergens weren’t expecting a long life for JohnPaul. However, they still needed resources to help them prepare for his birth and life, no matter how short it would be. In her research, Janelle learned that delivering JohnPaul by cesarean section would be the best option for them both. When Janelle approached her doctor with a birth plan that included comfort care measures, she was shocked by his response.

“The doctor said, ‘I’m not going to cut you open for a baby who’s going to die.’ I was just mortified. I felt so defeated,” Janelle said.

Subsequent meetings with their priest and outside doctors motivated the Gergens to persist in preparing to rightfully celebrate JohnPaul’s life. Eventually, her doctor conceded.

On April 12, 2013, JohnPaul was born via cesarean section. His heart rate dropped immediately, and he lived for one hour.

“It was me keeping him alive the whole time,” Janelle said, adding that JohnPaul opened his eyes and “squeaked a couple times” upon baptism.

“Our goal in raising our children is to help instill virtue and value so that they become holy men and women and go to heaven,” Janelle said. “So in our experience with JohnPaul, we know his life had purpose and meaning. But he’s in heaven. And we did everything we could to be his voice while he was here.”

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Supporting families

For this state legislative session, a number of organizations have partnered to introduce a bill that would provide expectant parents — upon receiving a diagnosis of Trisomy 13, 18 or 21 — with supportive and educational information from national and local organizations.

Legislation supporters

  • Down Syndrome Association of Minnesota
  • Down Syndrome Diagnosis Network
  • Jerome Lejeune Foundation USA
  • Minnesota Catholic Conference
  • Prenatal Partners for Life
  • The Arc of Minnesota

According to the Minnesota Catholic Conference, the public policy arm of the state’s bishops, many states have passed similar legislation in recent years with bipartisan support.

Heather Bradley, president of the Stillwater-based Down Syndrome Diagnosis Network, has witnessed and experienced the impact of support systems for parents who receive adverse prenatal diagnoses. Her organization’s online network connects parents searching for information and encourages them to write to their medical providers about their experience and suggest improvements.

“There isn’t a better time to have a child with Down syndrome — from the care they receive to societal acceptance,” said Bradley, who has a daughter with Down syndrome. “Physicians need to support families at a critical time with updated and accurate information.”

Dr. Steven Koop, a pediatric orthopedic surgeon at Gillette Children’s Specialty Healthcare in St. Paul and permanent deacon at St. Rita in Cottage Grove, said accurate information comes from multiple sources and can be boiled down to two: the health care community, and the individuals who have a trisomy condition or live with someone who does. The latter especially is important “so you’re not completely reliant on the health care community, because that’s only part of the picture,” he said.

“Expectant mothers deserve accurate information about their developing child,” Dr. Koop continued. “They also need to know how to care for their child properly, because sometimes there are challenges in caring for children with disabilities.”

Kelly Hodges is hopeful the legislation will pass.

“I think it will help get rid of some of the stereotypes of babies and people with Down syndrome, and have them see the potential and that it’s not a life sentence of misery,” she said.

After her experience with JohnPaul, Janelle Gergen, due on Jan. 22 with a girl, wants to see doctor-patient communication improve . She is optimistic about what the legislation could accomplish given its diverse support.

“This legislation brings sides together to advocate on behalf of special needs children and their families,” she said.

While the American College of Obstetricians and Gynecologists in a 2012 statement said that no current, comprehensive estimate exists of the number of pregnancy terminations following prenatal diagnosis of trisomy conditions, some studies have reported the termination rate is as high as 90 percent.

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Category: Legislative Guide