On Christmas Day, 2015, my son suffered a stroke. He was only nine months old. I had no idea that children could have strokes, and I definitely did not know infants could. That morning Buster had woken up very early and my husband and I brought him downstairs to see what Santa had put under the tree. He was very fussy so I carried him back upstairs for a nap, even though he had only been awake for a short time. At some point in his nap he awoke, screaming. My husband and I raced upstairs to his crib; I leaned over to pick him up and I noticed his left arm was shaking as he reached up for me. Other than that, he appeared completely fine. He hadn't bumped his head, his arms weren't stuck in the crib railing--all of
these things I checked, trying to figure out why he was crying so hard. He finally calmed down and we went for a family walk, and I put Buster in his stroller and bundled him underneath some blankets. When we returned from our walk I noticed that his left arm was still under the blanket, which was odd for him. He hated to be confined, even by soft blankets draped over his stroller seat. I also noticed his hand was in a tight fist, and it was difficult for me to open his hand completely. I called the hospital, and I was told to give him some Tylenol and bring him into the Minor Injury Clinic the following day. My husband and I brought him in, but the doctor could find nothing wrong with him. X-rays were taken and the doctor performed a thorough exam. He figured Buster had pulled his elbow out of his socket, which is, apparently, a common childhood injury; he also told us to give him more Tylenol but to follow up with his pediatrician. We chalked this up to Buster having a sore arm, that would be fine in a day or so.
At his doctor appointment a few days later, our naivete was shattered. Buster's pediatrician took one look at him and knew something wasn't right. The image of her moving his arms and legs and rolling his hips, and the focused look on her face will never leave me. I thought it was so odd at the time. I am never one to believe the worst. She asked for another doctor to come in for a second opinion and he nodded to her as if some secret were being exchanged. Buster's doctor turned to us and said, "You need to get him to the ER, now, for an MRI. I've called the pediatric neurologist on call and she will meet you there." I didn't know what to feel. I think I was in such denial that something was wrong, that I didn't think much about it at all. We raced to the ER, and what felt like hundreds of nurses and doctors surrounded Buster and us. They hooked him up to monitors and brought in a hospital crib for him. I asked the neurologist what we were looking for with an MRI and she said, "We think he either has a brain tumor, or he's had a stroke." I held Buster close to me and sang him "You Are My Sunshine" and begged God not to take my sunshine away. We waited for hours for his MRI to learn that he had had two strokes.
The three of us stayed in the hospital for about a week, running tests and pumping Buster with fluids to minimize the brain damage. He passed all of the tests to find the cause of his strokes. No clotting issues, no heart problems, no genetic malformations. His neurologist told us he would have Cerebral Palsy. At that time, I knew nothing about CP. All I envisioned was Buster in a wheel chair, until the resident working with Buster said CP is an umbrella term for any brain damage incurred by a child under the age of one, that causes motor function issues. Although her words assuaged me a bit, I had no idea the kind of journey we were in for. We left the hospital after a week with a hemiplegic diagnosis, and an unknown cause of his strokes. Actually, that's not accurate. We were told his strokes were "a fluke" and that 99% of the "fluke" stroke victims never have them again.
Over the next year and a half, Buster had multiple MRIs that showed only a small amount of brain damage. He met his milestones, only slightly later than what was typical for his age. Just before Buster turned two, we had a final MRI before we moved out of state. That MRI looked so good, his neurologist said, that we wouldn't need another one for at least two years. She asked us to make contact with a new neurologist when we moved, assuming he or she would want to run another scan to have his or her own baseline. Buster's new neurologist ordered an MRI and was not the greatest at communication. We didn't hear much about the scan, except that the doctor thought Buster's case was "unique." I remember our visit with him was peppered with his "Hmmmm"'s and "Huh"'s. The neurologist told us he wanted to show Buster's MRI to his other neurology colleagues around the country, and brought them to conferences and round table discussions. He knew that there had to be a reason for the strokes and he was determined to fully investigate. Buster saw a geneticist, and finally had a cerebral angiogram (a procedure in which dye is cast into the arteries that feed the brain, giving a clear view of how the blood moves within the brain and vascular system). The radiologist showed us the images and informed us that Buster was only getting blood (which carries oxygen) on one side of his brain.
The day after the cerebral angiogram, on my 40th birthday, Buster's neurologist called to tell us that Buster has Moyamoya disease. Moyamoya is a progressive, deadly disease that causes the carotid arteries (the main suppliers of blood to the brain) to collapse, causing strokes. The brain creates new pathways to help the closing carotid arteries carry blood to all of the brain, by building capillaries. On an MRI, these capillaries look like a tangled mess, or a "puff of smoke," which is what Moyamoya translates to in Japanese (Japan is where Moyamoya was first discovered). Eventually, the capillaries cannot hold all of the blood that the brain requires and they burst, with catastrophic results. Many Moyamoya patients die of aneurysms, and some die without ever knowing they had Moyamoya.
Buster's neurologist told us to see a neurosurgeon immediately, because although there is no cure for Moyamoya, there is a "fix." We met with a neurosurgeon two weeks later and we were not comfortable with him, so I began a 6 week long race to save my son's life. I called hospitals, specialists, insurance, and carried out research amidst my grieving. In the US, there are two Moyamoya expert centers: Boston Children's Hospital, and Stanford Hospital. After speaking with both centers that agreed to take on Buster as a patient and confirmed his diagnosis, we decided to move forward with Dr. Edward Smith, from Boston Children's. My husband and I immediately felt comfortable with Dr. Smith and I had grown up close to Boston. It all just felt "right."
On November 26, 2018, Buster had brain surgery to transfer his temporal artery from the side of his head to the top. The artery was stitched to the surface of his brain, with the hope that the artery would grow blood vessels down into his brain, thus supplying that side of his brain with the blood and oxygen it needed. Although we were relieved to finally have the surgery complete, it would take a full year before we would know if the surgery was a success. It takes time for the brain to change and we were told we may not see any progress at his six month follow up MRI.
A year later we traveled to Boston again for his follow up cerebral angiogram. Dr. Smith showed us the images and were astonished to see MASSIVE blood flow on the right side of his brain! One of the many reasons we felt comfortable with Dr. Smith is that he explains the intricacies of diagnoses and procedures so that we could understand them. He told us that the year prior, Buster's brain was "running on empty, and now it is running with a full tank." He also explained that his chances of another stroke dropped from 66-90% to 4%! There are no accurate words to describe our emotions at that point---joy, relief, gratitude, hope only touch the surface. We will forever be grateful to Dr. Smith and his fantastic team at Boston Children's.
We probably won't ever be out of the woods with Buster's condition. It can spread to the other side of the brain, and he needs yearly MRIs for the foreseeable future to monitor the disease. We also still manage his cerebral palsy on a daily basis with physical and occupational therapy, Botox injections, surgeries, etc. But the main monster, for now, has been defeated.
Photo by AMG Photography
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