Professors explore experiences of parents of children with Down syndrome
Monday, November 23, 2009
As she held her newborn son, despair, grief and denial wrapped themselves around Briana Nelson Goff. By society’s standards the baby was flawed. Her worst fears, she thought, had come true.
For Nicole Springer, pregnancy was filled with worry, tests and emergencies. But the moment her daughter burst into the world she knew this unusual baby was a survivor.
Both are professors, Goff at K-State, Springer at Texas Tech, Lubbock. Both have multi-page vitas crammed with research publications. Both are parents of children with Down syndrome.
Parenthood experiences prompt research
In a research project called "My Kid Has More Chromosomes Than Yours!": The Journey to Resilience and Hope in Parenting a Child with Down Syndrome, Goff and Springer are collecting information about how other parents developed the enduring spirits needed to manage the challenges of raising children with Down syndrome.
The project name came about because, while most children have 46 chromosomes, a child with Down syndrome has 47, an extra 21st chromosome. “We came up with the name for the study when my husband and I saw the phrase on a bumper sticker. That just said it all. Having a child with Down syndrome is a life changing experience, and part of it is finding the positive side of the journey,” Goff said.
She realized he was 'created perfectly'
For Goff, the first few days were filled with emotions. “It was so confusing to feel grief, when logically I should have felt joy for having a new baby.” Gradually, she began to realize that her son, Dalton, was created perfectly, even though he had that extra chromosome. She faced her fears and began the work necessary to ensure he would have every opportunity to exceed all expectations.
She realized she would survive and thrive. And so would her son.
Springer endured a preliminary, fatal diagnosis, two risky amniocenteses, numerous fetal monitoring appointments, an in-utero pediatric cardiology evaluation, and “so many doctor appointments I lost count.” At 36 weeks, her daughter was born after an emergency induction, ironically without the presence of the obstetrician.
“Katarina came into the world without a hitch and on her terms. She was breathing independently, never visited NICU, breastfed immediately and left the hospital less than 48 hours after her birth. She seemed to say ‘I may be small and have Down syndrome, but don’t underestimate me!”
“I knew Katarina was going to make her mark in a great way,” Springer said.
Seeks to understand 'journey to resilience'
The project coordinators understand their own journeys to resilience and hope. Now, along with students from K-State and Texas Tech, they will explore the journey experienced by other families with a child with Down syndrome. One in every 733 babies is born with Down syndrome and most to parents under the age of 35.
“We will identify the key resilience factors in families who have successfully navigated this difficult transition,” Goff said. She is a Licensed Marriage and Family Therapist, associate dean for academic affairs in the College of Human Ecology and professor in the School of Family Studies and Human Services.
Most of the information out there is either medical or personal, Goff said. “We will offer research-based data to support families dealing with Down syndrome and families facing this journey in the future.”
Research should help future parents
Goff and Springer anticipate two primary outcomes from this project, including publications and presentations based on the research data, and a consumer media publication for families with children with DS. The consumer media book will include the experiences of parents, in their own words, as well as several key resources to help parents in this journey. It will be fact-based, but also have the personal experiences of parents, Goff said.
The researchers will compile data from online surveys and follow up with more in-depth qualitative interviews with selected participants. Specific questions ask participants how they coped with their child’s Down syndrome diagnosis, about their relationship as a couple, and their hope and satisfaction with life. Surveys will ask for best moments and difficult moments.
From grief to hope and adoration
“Data we have gathered so far include experiences from parents who often face situations where they are frustrated, grieving, and confused. But they also describe the positive aspects and absolute hope and adoration they have for their child,” Goff said.
“These parents cherish and embrace the special moments that are often overlooked or taken for granted by parents with typically-developing children. Participants are also describing the ways in which their children have made them better as individuals and the new lens of tolerance they now possess for recognizing and being sensitive to difference in people of all kinds,” she added.
Need parents to take on-line survey
Participants include single parents and parents who are currently in a relationship (married, dating, stepparent, etc.) with children of any age (parents-to-be through parents of adult children).
Goff said the team hopes to gather several hundred surveys from parents. The National Down Syndrome Congress will feature the survey, available on its website, in an upcoming newsletter.
Parents of children with Down syndrome may participate at https://surveys.ksu.edu/TS?offeringId=148766
Goff added, “We are not doing this research as ‘experts’ in the field, but as fellow parents, providing information that we hope is more user-friendly and yet still factual in comparison to some of the professional literature that is often provided to new parents facing Down syndrome.”
“We hope that this research and the book publication will provide answers to some of the early questions faced by parents, family members, friends and professionals working with and caring for children with Down syndrome. I thought my life would never be the same…and I am so glad it has not been,” Goff said.
K-State students working on the study are Laura Cline, Courtney Tracy, Madison Peak and Taylor Veh.
Prepared by Human Ecology communications