Chiari Malformation

November 21, 2014

Chiara Malformation patient“There is an unexpected finding on your daughter’s MRI.”

My daughter, two-year-old Rebecca, was diagnosed with macrocephaly (enlarged head) a year prior to this MRI. Part of her care was to have her undergo an MRI of the brain, to ensure her safety and health. We had met Rebecca’s new neurosurgeon, Dr. Garrett Zoeller just prior to her follow-up MRI. My daughter was happy to play with him and the nurses, as he discussed Rebecca’s diagnosis, and his course of action.

Rebecca’s MRI showed a Chiari malformation, a herniation of the brain into the spinal column. This condition was not there a year prior and there was uncertainty of its origin. One possibility for her rapid onset of her Chiari Malformation was Tethered Cord. As he listed the symptoms of her conditions, many set off red flags in my mind. Rebecca was never as steady on her feet as her brother, a year older than her. Her walk was distinct and she often stumbled. She leaned more to one side as she walked. Just prior to her appointments, Rebecca stumbled and hit her head, requiring stitches. Rebecca was stumbling and less steady on her feet.

Dr. Zoeller recommended a full MRI of her spinal column, to check for tethered cord. In the matter of two weeks, Rebecca underwent two different MRls and received the diagnosis of Chiari Malformation and Tethered Cord. Days prior to her diagnoses, my husband and I discussed summer vacation plans. Now, we were planning for the possibility of surgery.

When Dr. Zoeller told us she would need surgery because tethered cord was discovered, I was terrified. Our little girl needed surgery. And not a minor surgery, at that! He brought up the actual films of her scan onto his computer, and showed us what we were facing. He illustrated through drawings the concepts of the surgery to untether her spinal cord. As we went through everything, my mind raced. What did this mean for my daughter? Would these conditions impact her quality or quantity of life? Would she be ok? Would she lead a normal life?

He ensured that we understood, answered any questions we had, and helped quell our fears. We were lucky to have her conditions noticed early enough that a treatment plan could be in place. The next weeks would be a blur, as we prepared for Rebecca’s surgery. Throughout the pre-op period, we were in constant contact with the staff. Any question that we had or concerns were immediately addressed, and resolved.

On the day of Rebecca’s surgery, we met with Dr. Zoeller and Mr. Tom Sernas, the office’s physician assistant, and any of our final fears were laid to rest. I carried her into the operating room, kissed her on the head and prayed for my daughter and those working on her. The surgery itself was not a long one; but to a parent waiting for their child to return back to them, it was an eternity. When we saw Dr. Zoeller come out into the waiting room with a smile on his face, our family was relieved. Rebecca had done well!

Rebecca remained in the hospital for three days, one of those days in the Pediatric Intensive Care Unit. Throughout her stay, we were in constant contact with her surgeon, Mr. Sernas and the nurses of his staff. The staff from the office that would visit her daily would try to make her smile, ensured her pain was managed, and genuinely cared about her well-being.

It was difficult to watch our daughter in the hospital. For the first two days after the surgery, she was not allowed to sit up, to help discourage swelling around the wound. She, even after surgery, was happy and smiling, trying to dance laying down and singing. She was so brave.

When she left the hospital, her follow-up care was nothing short of extraordinary. At every step of her recovery, the doctors and staff have been available to ensure Rebecca makes a full recovery.

What set apart Rebecca’s doctor and his staff was the upmost care and respect for the entire family unit. Not only was Dr. Zoeller, Mr. Sernas, and their staff attentive to my daughter’s care, there was also concern for us as parents, ensuring that we were doing okay, and ensuring that we were informed at every point of her care of what was happening and what would happen next. The compassion of the staff is genuine. Each member of Rebecca’s care team truly wants what is best for her and her well-being!

Rebecca is doing well. Her walk and gait has improved. She stands straighter and she seems steadier on her feet. She is back to being a ball of energy, running around, playing with her dolls and playing dress up. She is back to doing all the things that two year olds strive to do; to play and learn.

Our daughter is the bravest person we know and our little super hero. She has handled all her doctors appointments, testing and surgery with such determination and courage. She has not let anything slow her down one bit and continues to grow every day!

Rebecca will require monitoring for her chiari malformation. While it is uncertain as to what the future will hold, or if she’ll require further surgery, we are confident that if and when that time comes, that Dr. Zoeller and his staff will be able to treat Rebecca and help her be at her best. We are extremely grateful to Dr. Zoeller, Mr. Tom Sernas and the staff of New Jersey Pediatric Neuroscience Institute for helping make our little girl well again, and keeping her well.

Amy Di Cristo