Laci's Story
Matthew and Becky Lowell are a couple who enjoyed adventures. They went snow skiing, camping, white-water rafting, climbing, and they even went skydiving, but their most challenging adventure arrived on July 2nd in 2006 when their daughter, Laci, made her debut.
When Becky was five months pregnant, she and Matthew learned that the daughter she was carrying had birth defects. A cleft lip and palate were discovered, and it was determined that Laci would need facial reconstruction surgery after birth. When Laci arrived, her parents soon discovered that Laci had other issues including heart defects, bilateral colobomas of the eyes, and ear abnormalities. When Laci was five months old, her parents were told she was legally blind, and in April of 2007, she was given the diagnosis of severe to profound deafness. After two years of testing, Laci was finally given the diagnosis of CHARGE syndrome in the summer of 2008.
Laci was fitted with hearing aids and her parents saw an immediate response. Laci was able to hear and process sound when amplified, and she really enjoyed being able to hear. Her parents wanted to immediately implant her, but due to the current FDA restrictions, they had to wait until after Laci’s first birthday. She was successfully implanted with a Cochlear Nucleus Freedom on the right side in August of 2007.
Receiving a cochlear implant opened a whole new world to Laci. She now has many words in her vocabulary and in her dad’s words, “She has proven to be very smart.” She will tell you her full name and that her nickname is “Laci-bug”. She sings “Ring Around the Rosie” and asks for “Ice cream from McDonald’s” just as you would expect any typical three-year-old to do.
“What really blows our mind is her memory,” says Becky. “The biggest surprise was reciting The Lord’s Prayer with us at night. She is also good at reminding us when we forget to pray before meals. She will say ‘Oh, we forgot to say our prayers’, so we all stop and say together ‘Bless us oh Lord…”
Matt and Becky have not let Laci’s diagnosis of CHARGE syndrome keep them from doing the things they love. Matt does all the things that fathers do with their typical kids. They go for walks, clean the garage, wash the car, go camping, go swimming, visit her grandmother’s farm, and feed the cows. Matt has even taken Laci out to the shooting range! When you ask Matt about his advice to other fathers on getting involved in their special needs child’s life, he’s pretty frank, “If you don’t raise your kid, someone else will. Do you want to be responsible for that?”
Some parents, fathers especially, have a hard time adapting to the special needs’ world, but Matt sees it differently. “We (Becky and I) don’t really see it as ‘adapting‘. This is normal to us, and it always will be. We do not have other children, so there is really nothing to ‘adapt’ from. I guess the biggest change for us was just having a baby. That was huge. Laci has had a lot of doctors, a lot of surgeries, but again, to us, that is normal.”
As a part of the research study, Matt, Becky, and Laci have received wonderful information and resources. “If you are considering a CI (for your deaf-blind child), then get involved with the CI study,” recommends Matt. “The people leading the study have been in this line of work for many years and really know their stuff and are really interested in helping these children.”
Determining the Benefits and Challenges of Cochlear Implants for Children with Combined Hearing and Vision Loss
Children Who are Deaf-Blind with Cochlear Implants
Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A). Grant H327A080045; Project Officer, Maryann McDermott. Opinions express within are those of the project/author and do not necessarily represent the position of the U.S. Department of Education.
