Wednesday, 21 August 2019

Sharing Jennifers story

My granddaughter Jennifer wrote this story. I just copied it from her own words.  Carter is my great grandson and sweet as the day is long.
Carter's Journey
In February 2019 at just over 2 years old Carter had his 1st seizure 24 hours after falling down the stairs at home. It was short and scary and after being seen by his pediatrician, Carter was cleared neurologically. His pediatrician told us that a high percentage of kids have a seizures in their childhood as a part of normal development. We were sure he was going to recover fine and told to call if we had noticed anything going forward. In April 2019 while on vacation Carter had his 2nd seizure and it lasted almost 2 minutes. Within 12 hours from his 2nd seizure he had his 3rd and we immediately took Carter to the local ER to be checked out. The Doctor ordered a CT, emergency EEG and a neurological exam to make sure everything was ok, which came back as possibly abnormal. That was the first day I ever heard the words Chiari malformation. What was supposed to be a 1 week spring break trip turned into 2 weeks as we waited for a neurologist to clear Carter to travel home. Many people did not know how difficult things were getting for Carter. I questioned his eating habits, speech ability, sleeping patterns, and daily behavior. I mentioned it several times to doctors and was always told he's a little behind but he's OK, or he’s a little underweight but he’s technically on the growth chart so there is nothing to be concerned about. I was convinced by others that I was being over protective and worrying too much. I tried to adjust to the fact that he was a toddler and maybe this was just how things were going to be with him. Hopefully one day he would grow out of it. May was the worst month for Carter. He never slept and when he did he was screaming most the night. His relationship with his brothers was struggling. It seemed like things were getting bad very fast. It became impossible to get him to eat anything and I was feeding him spoonfuls of peanut butter and protein shakes to just get something in him. When I started researching Chiari malformation I was scared, but somehow relieved. Everything I noticed with his growth and development fit so well within the symptoms of this neurological disorder. So we waited for an answer. After returning home Carter was scheduled for an MRI and officially diagnosed with Chiari 1 malformation. Chairi malformation is when the cerebellar tonsils begin to push on the brain stem and descent out of the skull. Some people have a Chiari with no symptoms, others have very severe symptoms. The fall Carter had down the stairs did not cause his Chiari but the Doctors do believe it increased his symptoms. A few weeks after his official diagnosis we met with a neurosurgeon to schedule surgery. The neurosurgeon asked questions about Carter’s development and how his days go and it seemed as though we were adding more and more symptoms to the list with each question. Everything was moving so quickly I never had time to event think about or process what was going on. We knew Carter needed surgery and that it would help his symptoms so we prayed and waited for surgery. June 17th 2019 we arrived at the hospital for Carter’s surgery. He had an amazing team of Doctors taking care of him, including the head of Neurosurgery at Primary Children’s Dr Brockmeyer. His surgery lasted about 2 hours, the Doctors carved out part of the opening at the base of his skull, removed the back of his first vertebra and decompressed the cerebellar tonsils, it was a total of 4 1/2 hours that I was away from him because the medicine made him sleep so well after surgery although it felt like much longer. We stayed in the hospital for 4 days as Carter healed and were able to spend the following 2 weeks at home so he could continue to recover. The change in him was so quick. He started eating real food almost immediately, actually sleeping at night, and could put 3-4 words together in a sentence. Throughout everything, Carter has been my rock and my hero. Carter has been so brave and strong and continued to put a smile on everyone's face. Carter's journey with Chiari malformation is not over. Sadly as much a surgery can help a person experiencing symptoms from Chiari malformation it is not a cure. He may need surgery again someday, he may not, symptoms may reappear or never come back. Carter is also continuing to battle a seizure disorder. There is no way to really know how Chiari will affect Carters future, or if it will. We do know that things are getting better for now and are continuing to get better each and everyday, that Carter can handle anything and he has a huge support team that will always be there.


  1. May God watch over this precious child, and I am mentioning him when I say the Rosary tonight, Nonie....and his mother. I'm so glad to hear he is getting better with each day. : )


  2. What a precious little guy and so scary! Healing prayers to Carter.

  3. Oh my, Prayers will continue for Carter and your whole family. I Can't imagine how difficult this has been, I am sure you are all still very concerned. God Bless.