Olivia Harness-Clark

Olivia's Story
by Amanda Harness

The Harness-Clark family of Independence, MO consists of Amanda and Jill, and their children Griffin, 3, and Olivia, 2 years. Griffin is a bright and typically able boy, and Olivia is a beautiful, curly-haired, bright-eyed little girl who happens to have Cerebral Palsy.

Olivia was born via emergency c-section after an attempted vaginal birth; Griffin had also been delivered by means of a cesarean. My uterus had ruptured during labor and she had been expelled into my abdomen and was without oxygen for about 15 minutes before she could be delivered. Olivia had to be resuscitated and put on life support, and we were told that her brain would swell and bl eed and that we would probably have to wind up taking her off of life support. Olivia had other plans though, thankfully. She was breathing completely on her own and her seizures stopped within 24 hours of birth. She was home and nursing with seemingly no ill effects 10 days after delivery. We were told not to anticipate any problems.

Unfortunately, that was not the case; around 6 months of age she was diagnosed with Cerebral Palsy. She takes medication and has several pieces of equipment that help her daily.

We began suspecting problems when Olivia was around 2 months old. She was very stiff, she wasn’t growing out of a lot of those newborn baby reflexes, her suck was weak, and she didn’t have the head and neck control that other babies her age typically had. Olivia was seen by a developmental Pediatrician at Children’s Mercy Hospital and given a diagnosis of spastic quadriplegic Cerebral Palsy at 6 months of age. In a nutshell, CP is brain damage caused from either lack of oxygen or bleeding in the brain before, during, or immediately following birth, or brain injury early in childhood.

Olivia has been on liquid Klonipin and Baclofen and has received Botox injections to reduce her tightness. Olivia has several pieces of equipment that help her daily. She wears DAFO’s (tiny little plastic leg braces) to help support her legs, she uses a stander to help her to bear weight on her legs, and she uses a Kid Kart (kind of a youth wheelchair) to eat in and for mobility. She receives therapy 6 times a week through the First Steps program. We love First Steps because it allows the therapists to work with us on our goals and in our own home. She is now much better able to move her body and is also starting to find her voice, which we are thrilled about!

We were given the double-whammy of receiving a completely unrelated diagnosis when Olivia was 15 months old. After being sent to a geneticist, we found that Olivia had a genetic disease called Neurofibromatosis type 1 (NF1). NF1 was diagnosed because Olivia has a lot of café au lait birthmarks on her body and a lot of armpit and groin freckling.

Despite the hurdles and fears, we lead a happy life and enjoy both of our children tremendously. We know that Olivia has many purposes on this Earth, and we cannot wait to see how her life unfolds and the great things that she will do. This is not exactly the ride we signed up for, but it is filled with great joy and hope, and we wouldn’t take the other road for anything.