Diagnosed at 1
Noelle
Story Written by Mother
Noelle was born October 26th, 2012 a beautiful 7 lbs., 10 oz. baby girl. Her first year was spent doing all of the things babies do – learning and growing. Her well-checks throughout her first year were normal, with the exception of a larger head which her older sister had had too. By the time Noelle was 12 months old, her head had grown to 52 cm – 110%. This was on Monday, October 28th, 2013. We had Noelle’s one year checkup. It was all very routine – weight, length and head circumference. Noelle has always been our “brainy” baby since her head measurement topped the charts at six months old. At that time, there was no concern given her other measurements and overall health. Her older sister at six months was also immobile. At nine months, I opted out of a checkup given she continued to be happy, healthy and oh so content. There are also no immunizations given at nine months. I tell you all this because deep in my heart, I believe everything happens for a reason. Back at her checkup, I voiced concerns with our pediatrician about Noelle’s large gross motor skills – rolling, crawling, pulling herself up, walking – you name it. She was a rock star at sitting, but that was all. Given our concerns and her head size, the doctor recommended a physical therapy (PT) evaluation and an ultrasound for Noelle’s head to see what was causing the size. Noelle still has her soft spot, which allowed them to view inside without an MRI. We were fortunate to get the PT evaluation later that day and the ultrasound was scheduled for Wednesday.
Noelle was a champion at PT. She excelled at everything other than the physical stuff. She tested right at 12 month for fine gross motor. I did ask the therapist her thoughts on head size as it relates to mobility. She compared Noelle to an adult having a gallon of milk on their head and trying to function. It definitely made a difference. Wednesday morning we had Noelle’s ultrasound right away in the morning. As we waited, I realized we were sitting in the same chairs as we did when we had the ultrasound when I was 20 weeks pregnant. Looking back, this exact moment, I get very emotional. Same two chairs. Two incredibly defining moments in our lives. Here is where things accelerate and get blurry. The ultrasound was textbook until the end when we were asked to stay in the room until the radiologist had a chance to review the results. Weird. The technician returned and asked us to call our pediatrician right away. Weird. And weirder. Todd, Noelle’s dad got on the phone right away. There was a lot of “ok” “ok” “ok” which made my stomach turn. When he hung up he said something I will never forget. He said, “Noelle has water on her brain. We need to go upstairs. She needs an MRI.” I think I blacked out until we were upstairs at the Children’s Hospital.
Noelle had her first MRI at 1:30PM Wednesday, October 30th, 2013. She had to be put under for the procedure and in typical form, was remarkable. We played the waiting game for a few hours; eventually, we were told that we would be receiving a call from our doctor and Gillette’s Children’s Hospital in St. Paul!? Without a second to think, our phone was ringing and we were making plans for our trip to St. Paul the next day. By this point, our Pediatrician arrived to tell us that Noelle has Hydrocephalus. She said that this is likely something Noelle’s had since birth and that there’s been gradual pooling of fluid over time. She also said that this condition isn’t treated in the Fargo Moorhead area and that’s why we needed to travel to the cities – to see a pediatric neurologist – a baby brain surgeon.
On the road to the cities, our appointment with Dr. Peter Kim was scheduled for 2:30PM. It was Halloween. Noelle was wearing orange and black. Her monkey costume was hanging in her closet at home. Dr. Kim came in and shook our cold, clammy hands. He put up pictures of Noelle’s MRI from the day before. Water. Lots of water. He was so eloquent and calm explaining how our bodies are supposed to transfer this CSF up and down the spinal column. Noelle’s wasn’t moving much which was causing her head to grow large. He then explained our options. Both involving brain surgery. Option one was an Endoscopic Third Ventriculostomy (ETV). This was our cure – it was going to be Dr. Kim creating a new “drain” in her brain for fluid to drain. Option two would be a shunt. We squirmed at option two knowing that there may be chances for repeat surgeries, complications and potential limitations. We voiced our concerns and learned that children can go many years without complications or repeat surgeries. We also learned that her limitations do not exist. With the exception of staying away from magnets, she can be a normal, active little girl. Dr. Kim scheduled her for brain surgery at 8AM, the following day, Friday, November 1st, 2013.
We arrived at the hospital at 6AM that morning. She received her first IV at about 7AM. Then shortly after 8AM, I carried her down and handed her off to the anesthesiologist. We had given our phone number to an OR nurse who was going to call us with updates. We received the first update at 9AM staying the ETV wasn’t an option and that they would begin the process of placing a programmable shunt. After another hour (and meltdown) we received word that she was just finishing up. We got to see her shortly thereafter, a sight I will remember forever. We were then moved to a room where she quickly drank two bottles of pedialyte.
Noelle’s is almost five. Thankfully her post surgery journey has been much less eventful. We played a balancing act for two years to get the setting of her shunt perfected. She completed one year of physical therapy and so far continues to thrive. We had her most recent MRI July 11th and the results over the past three years are the same – tumor size too. For now, our plan is to continue to have annual MRI’s to keep watch and enjoy every day of this life. We are so thankful for the Hydrocephalus Association and all of the connections, information and care. We are actively involved in the North Dakota Support Group and participate consistently in the State of Minnesota annual WALK. We are determined to continue to raise awareness for hydrocephalus and help those impacted as much as possible.
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