Posted on May 18, 2016
Hetler family has ‘only positive expectations’ for daughter born with limb differences
Guest blog: Kellie Hetler is a photographer from Grand Rapids whose daughter, Gabriella, was born with congenital skeletal dysplasia, an upper extremity limb difference. Kellie chronicles Gabby’s story on a website called “Gabriella’s Hope.”
Kellie also has organized a fundraiser for Mary Free Bed’s Center for Limb Differences. A special screening of Disney Pixar’s “Finding Dory” will be held at 3 pm Saturday, June 18 at Celebration Cinema RiverTown, 3728 Rivertown Pkwy. in Grandville. Tickets are $15 per person and include a ticket to see the film, popcorn and pop. To purchase tickets, email khetler@gmail.com or call 231.519.0165. Click here for the Facebook event.
At Gabriella’s 20-week ultrasound, we found out both her left and right arms were not developing properly. We didn’t know the severity, just that they weren’t “normal.” We had several ultrasounds after that to keep an eye on her growth and make sure there were no additional problems. Thankfully, she kept growing well and stayed put until July 2, two weeks before my due date. When she was born, we were finally able to see what we couldn’t in the ultrasound. Her radius bones were missing, her ulna was short in both arms, her humerus was short in her left arm, and she only had four digits on each hand. None of that was a surprise, but what we discovered later was a shock. Gabby was also born with two small holes in her heart, an ASD and VSD. She is also profoundly deaf in both ears, has a narrow portion of her esophagus and Duane syndrome in her eyes, which means she can’t look outward because the muscles attached to her eyes weren’t formed properly.
Even though she was born with many differences, we have come to not only accept them, but embrace them as well. Gabby has changed who we are down to our core and only for the good. We have met so many wonderful people along our journey so far, and she is only 10 months old. We cannot wait to see what her future brings and what other blessings she will pass down to us and those around her!
We started going to Mary Free Bed when Gabby was only a couple months old. Her orthopedic doctor, Lisa Maskill, suggested we start occupational therapy to hopefully stretch some of her stiff tendons and ligaments, and to see what she can do with the arms she was given.
Gabby’s therapy has been great and rather interesting. Her occupational therapist, Ellen Rosevear, always brings out new toys and tools for Gabby to play with. Some days she plays with regular toys and other days, Ellen has her scooting along on cute little bikes, holding tools that vibrate or light up, and sometimes we even play games with a goal in mind. You wouldn’t believe how difficult it is to keep a little baby’s attention, especially when she can’t hear. We also met with occupational therapist Rose Pelton, who created these amazing, tiny little splints for Gabby’s arms to help stretch her wrist out and to help her elbows bend. I can’t believe the progress these created!
Ellen is so much more to us than just Gabby’s occupational therapist. She has been so encouraging and so wonderful to work with. When we first started going to Mary Free Bed, she had me sit right on the floor with her and assist in therapy. She wanted me to have the tools we need to help Gabs as much as possible at home in order for her to progress each and every day. It is obvious Ellen loves her job and loves every patient she works with. Not only was she helpful in pushing Gabby along, but she celebrated victories with us and gave me hope to pull myself out of any slump I was in. Everything she’s done is for us, selfless and inspiring, each step of the way.
Since starting therapy at Mary Free Bed, Gabby has overcome many obstacles. I have been given the tools I need to help her be successful at home, and I’ve been inspired to help others as well. During some of our first visits, Gabby was quite an unhappy little lady. Ellen helped me figure out Gabby had reflux, and she became happier and happier once we sought treatment from her pediatrician. Gabby is still a little behind in some areas, which is to be expected, but she is gaining so much at each visit. Gabby is building skills and blazing her own path, growing in confidence and maturing all the time.
I would definitely recommend Mary Free Bed to anyone who needs therapy or rehabilitation. It is such a wonderful place that loves its patients. Experiencing the way our family has been cared for makes me so thankful there is a place like this so close to our home. Each minute spent at Mary Free Bed is one more minute of independence and confidence gained.
Since Gabby was born, our life has changed rather drastically. Because of all of Gabby’s therapy and doctor appointments, I’m not able to work as much as I used to. What we have lost in income, we have been blessed with in relationships and things that are much more meaningful. Gabby has inspired me to reach out, tell our story and use it to show others that a diagnosis or difference doesn’t have to be a bad thing. It can be a good thing!
My husband, Joe, and I want Gabby to grow up and have as much fun as possible. We want to give her the tools she needs to be successful in life and the confidence to be OK with standing out. We want her to own her differences, show others how to rise above obstacles in life and know that no matter what, she is beautiful, loved and, most importantly, perfect just the way she is.
When I heard about Gabriella’s differences at our 20-week ultrasound, I knew I wanted to help others with our quickly changing life. Before she was born, I started a blog called Gabriella’s Hope. We gave her the middle name Hope because of an acronym we came across: Having Only Positive Expectations. We know that if we truly have only positive expectations, we can rise above anything. If we choose to be happy, we will be. And if we can show others that they can do it, too, then we have succeeded.
