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Passing on hope

Parents and role models help families support their children with hearing loss through the BC Early Hearing Program’s Guide By Your Side program.
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​The Guide By Your Side team, with Rabab Elbaharia in white.

​In 2014, excitement turned into uncertainty for Rabab Elbaharia and her husband when a pregnancy ultrasound revealed a "two-vessel cord" for her baby. While a normal umbilical cord includes two veins and one artery, the umbilical cord for Rabab's baby contained only one vein and one artery which carried blood to and from the placenta. 

Rabab was promptly referred to a specialist, who monitored the baby's development. The heart and kidneys were most at risk as they developed at the same time as the umbilical cord. An echocardiogram discovered that Rabab's baby would experience a number of heart abnormalities, but the full extent of her baby's condition would not be known until birth.

Daughter Salma arrived in April of that year at BC Women's Hospital. Along with several cardiac defects, Salma was born with an underdeveloped left external ear (a condition known as microtia). She did not pass her initial hearing screening, and follow-up testing determined that Salma was mildly to moderately deaf on her left side, with normal hearing on the right. 

As a new immigrant from Egypt with little connection to her new community, Rabab relied on parent guide Catherine Kalchbrenner from the BC Early Hearing Program’s Guide By Your Side (GBYS) program as a source of support. Parent guides are trained to support other families by listening and sharing their own experiences about raising a child who is deaf or hard of hearing.

"There was an immediate connection with Catherine when I first met her because we both have daughters who have hearing issues. She told me her daughter can communicate confidently, and this gave me more hope for Salma’s future. 

"When I was planning to visit my family Egypt, I was worried about how my family would react to Salma’s hearing. Catherine was always there to listen to my concerns and help put me at ease. She checked in on me frequently to make sure I was doing ok and it was a relief to be able to share how I felt with someone. 

"I had a long list of questions and Catherine was always so patient and helped me find the answers. From schooling to questions about Salma’s development, it was so valuable to be able to ask Catherine how she handled each situation."

GBYS’s deaf and hard of hearing (DHH) guides have also provided Rabab and her family with a sense of optimism. DHH guides are adult role models who are trained to provide parents with perspectives from their day-to-day, real-life experiences. Rabab met Jesse Kazemir at a Guide By Your Side event. He is a musician and third-year SFU engineering student with hearing challenges. 

"It was amazing to meet Jesse, and to see such a successful young role model right in front of your eyes. It had an incredibly positive impact on me."

Grateful for the support she received from GBYS, Rabab has been actively involved in the deaf and hard-of-hearing community. Last year, she was invited to attend an audiologist meeting when an opportunity to become a parent guide through GBYS became available. She applied right away and became a parent guide early this year. 

"I really want to give back. I have benefitted enormously from the support this program has provided, and it's been wonderful to share my journey in raising a child with hearing challenges with Catherine. We're in a good place now. I have learned to accept my daughter's hearing challenges, so she will hopefully feel supported to accept it without any problems." 
As for Salma, she is a healthy and happy four-year old who loves to draw and play with her friends. Enrolled in a Montessori program, she uses both sign language and speech to communicate.  

Guide By Your Side is the family support program of Hands & Voices™ and was the program chosen for BC as a result of recommendations from the Parent Advisory to the BC Early Hearing Program. The BC Early Hearing Program provides integrated services from newborn hearing screening to hearing testing as well as early language support following identification of hearing loss for babies born in BC.  

For resources and to learn more about Guide By Your Side and the BC Early Hearing Program, visit www.phsa.ca/earlyhearing.
BC Early Hearing Program; patient experience; Patient story
 
SOURCE: Passing on hope ( )
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