Makenna was born on March 27, 2007 in Fishers, Indiana, weighing 5 lbs, 3 oz. Although this perfect, beautiful, baby girl was born four weeks early, she passed the newborn tests with flying colors.
“At about three months, I noticed that her eyes were not tracking from right to left,” recalls Amy Replogle, Makenna’s mother. “We were referred to a pediatric ophthalmologist who ordered an MRI of her brain.”
The MRI results indicated a diagnosis of a cranial sixth nerve palsy and strabismus (a condition commonly known as crossed eyes where eyes do not line up in same direction when focusing.) The eye doctor explained that Makenna was only using one eye at a time, but that each eye was actually quite strong by itself. The eye that she wasn’t using would drift to a crossed position. The strabismus condition was affecting Makenna’s development, and as a result, delayed her ability to walk.
Makenna went in for eye surgery at 19 months. They realigned her eyes by tightening (shortening) the muscles on the inside of her eyes. A few days after the surgery, Amy recalls, “Not only did her eyes align nearly perfectly, but she got up and started walking. It was like night and day. It still gets to me every time I think about it. It was like a second ‘birth day.’ She came alive after that surgery. Before, she had to spend so much energy just trying to focus and make sense of the double vision that she just couldn’t engage in eye contact.” Although the strabismus condition was successfully mended, the nerve palsy affecting Makenna’s ability to move her eyes outward, cannot be repaired.
Amy Replogle with her daughter, Makenna.
After the eye surgery, Makenna’s parents felt like they were in the clear and could breathe a sigh of relief. But then last summer, Amy noticed that Makenna was walking peculiar. Her right foot never quite got in front of the left. The neurologist ordered a second MRI to rule out any neurological causes of the discrepancy. But before they could get the results, Amy noticed during a bath that Makenna’s right rib cage was sticking out to the side. Amy ran her finger along Makenna’s spine and felt a curve.
X-Rays confirmed that Makenna had a curve in her spine measuring 20 degrees. Technically, she would be in the “watch and wait” category of scoliosis to determine whether or not it was self-resolving or progressive. However, in Makenna’s case, there is a rare connection between the sixth nerve palsy and the scoliosis called Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS). Basically, she has brain stem hypoplasia (underdevelopement), creating a cleft or ridge in her brain stem right at the nucleus of the sixth nerve. There are very few cases (about 80) reported in the world. All research indicates that the most troublesome aspect of the condition is the scoliosis. So this is where Makenna’s parents turned their attention.
The typical treatment plan for kids with Progressive Infantile Scoliosis (PIS) is to fit them with a brace that they wear 16 hours a day, to control the curve and postpone surgery as long as possible. The surgeries involve an initial major surgery to insert an expandable growth rod followed by routine minor surgeries every six months to expand the length of the rod. This type of treatment was obviously not something Makenna’s parents had desired.
By chance, Amy met a mom with a 2 ½ year old daughter who had just gotten out of a cast for PIS. This treatment option was never mentioned by Makenna’s doctors. Amy was directed to the website for Infantile Scoliosis Outreach Program (ISOP). After much internet research and phone calls, it became increasingly apparent that the best method for treating progressive scoliosis in someone as young as Makenna was Early Treatment with EDF (elongation, derotation, and flexion) using the Mehta Method. That is a very complex description of what amounts to serial casting. Not only does it offer a three dimensional treatment to a three dimensional condition, but is has proven results of correcting the curve. The goal with this time-sensitive treatment plan is to actually correct the curve in the hopes of avoiding surgery all together. The earlier the treatment is begun, the greater the rate of success. The best results are achieved when the child begins casting under the age of two and the curve is less than 50°.
The specific method of treatment was developed by Dr. Min Mehta. The casting is done in an operating room under anesthesia on a traction table. The curve is corrected slightly while the cast is applied. The cast stays on for three or four months depending on growth and then a comparison x-ray is taken. When they apply the new cast, the curve is corrected a little more. This process continues until the physician feels they’ve reached maximum results for the particular child.
There are very few hospitals in the United States treating scoliosis using this methodology. The closest to our area is Shriner’s Hospital in Chicago. Makenna received her first cast at Chicago Shriner’s Hospital this past November. Amy proudly exclaims, “Makenna’s curve measured 25° prior to casting and she is currently casted at 0°! Every child with Progressive Infantile Scoliosis should be given the chance that ISOP and Shriner’s has given Makenna! We are eternally grateful.”
Amy continues, “I want to share Makenna’s story with everyone—not to dwell on all the challenges and frustrations we have encountered, but rather, to reach out to others who may be experiencing similar hurdles with their child. Searching for the best doctors, and the latest research or treatment options is the very best we can offer our children. As parents, we are their best advocates. We should always have faith and keep searching for answers.”
To read Makenna’s full story go to: http://www.strengthofspirit.weebly.com
More information is available at:
Infantile Scoliosis Outreach Program (ISOP)
“Casting for a Cure”
Scoliosis Research Society
The Engle Laboratory
If you wish to contact Amy Replogle (Makenna’s Mom) her email is sos_2010@comcast.net.
