Stroke Smart Magazine
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Parent to Parent
By Lynn Bronikowski
Mary Kay Ballasiotes of Naperville, Ill., will never forget her doctor's chilling words during her pregnancy nearly 10 years ago: “Your baby has a brain abnormality.”
Doctors carefully guided her through the final weeks of pregnancy. At 36 weeks Michelle was born in November 1997. She looked perfect. But shortly after her birth, neurosurgeons diagnosed Michelle with hydrocephalus, an abnormal build-up of fluid on the brain. They determined that she had survived a prenatal stroke at around 29 weeks.
“It was shocking to get the news. We had no idea that babies could have strokes,” said Ballasiotes. According to the latest statistics one in 4,000 babies suffers a stroke and in one-third of those cases, there is no known cause.
“We were lucky she was diagnosed so young — as an infant,” said Ballasiotes. “That's the time to get in there with intervention therapy, which we started when she was just six months old.”
Now she is on a mission to spread the word and support other parents whose children have survived strokes.
“I didn't know where to turn and needed information from other parents about how to handle what our family was going through,” said Ballasiotes. “We didn't fit in with other support groups such as cerebral palsy because Michelle's disability is mild. Michelle's right side is weaker. And she wears an ankle-foot orthotic brace.”
So Ballasiotes started her own support group, Childhood Stroke & Hemiplegia Connections of Illinois, which in 2002 had six families and today includes 70 families and is growing. Heather Tangen also started the Pediatric Stroke Network when her son, Jacob, survived a stroke before birth. And the Children's Hemiplegia and Stroke Association was founded as an online support group by Lynn Atwood whose 13-year-old daughter had a stroke shortly before birth.
“It can be very isolating to have a child who has had a stroke. You can even feel like you've failed somehow,” said Ballasiotes. “But it helps when you can talk to a parent who has been there because only a parent who has been there can truly know what you are going through.”
10 Tips for Starting a Support Group
By Mary Kay Ballasiotes
- Find members by posting a message on http://www.hemikids.org/ and http://%20www.pediatricstrokenetwork.com/, asking families within a 50-mile radius to contact you.
- Post flyers about your group at the various offices of your child's doctors.
- Publish your group's meeting info in Stroke Smart, on National Stroke Association's website (www.stroke.org) and in local papers under "Support Groups."
- Select a convenient location for your initial group members, preferably in a public place; you really don't know these people.
- Invite medical professionals and other speakers to talk to your group.
- Plan some fun events for the whole family in addition to the support group meetings.
- Provide a list of each group member's name and contact information (provided they give you permission to do so).
- Put together a "welcome packet" for new families, including a list of local resources and specialists.
- Don't give medical or parenting advice, but do share your experiences with the group.
- Don't get discouraged if few families show up; even if just one family comes, you have made a difference.
TO GET CONNECTED
Childhood Stroke & Hemiplegia (CSH) Connections of Illinois is a support and information group for families with children and young adults who have hemiplegia due to pediatric stroke or other neurological trauma. CSH provides families a chance to meet and interact on an ongoing basis. The group holds six to eight meetings a year, as well as seminars and family events, and maintains a resource guide of doctors, therapists, service providers and researchers.
Children's Hemiplegia and Stroke Association is a non-profit organization offering support and information to families of infants, children and young adults who have hemiplegia or hemiplegic cerebral palsy.
Hemi-Kids is an email support group operated by CHASA for parents of children who have hemiplegia or hemiplegic cerebral palsy.
http://www.stroke.org/site/“http://www.kidshavestrokes.org” Kid Have Strokes offers information on prenatal stroke, infant stroke, perinatal stroke, neonatal stroke, in utero stroke, fetal stroke, stroke in children and young adult stroke. www.pediatricstrokenetwork.com The Pediatric Stroke Network helps parents connect with other parents by maintaining an online email list.
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