Anakin’s Story as told by mom, Lauren:

It all began when Anakin was 9 months old. He was a typically developing baby and he was just absolutely delightful. He was beginning to pull up on furniture around the house and had began to say “tees!”, his own sweet way of saying teeth. He was our third child and I couldn’t be more grateful for how amazing and healthy they all three were.  

What transpired next was simply unimaginable. It began as tiredness, which we attributed to teething, which was in full swing. The next day, he was dramatically lethargic. I could not keep him awake. Next, he vomited…and then his eyes crossed….at that point we were beginning a journey that we couldn’t have ever imagined would take place. We took him to the children’s ER. They checked him for toxicity and infection. The tests were negative. The ER doctors began to speculate that this was just some sort of sickness that he’d eventually get over, and said that we should take him home. I refused to be discharged until my baby, whose eyes were crossed and couldn’t stay awake, had been properly diagnosed. The ER doctor decided that meningitis could certainly be a possibility and ordered a spinal tap; however, her mind was soon changed and ordered a Cat-scan instead. The CT showed a mass sitting upon his brainstem and it was blocking the flow of cerebral spinal fluid. My heart was devastated. I felt like everything was spiraling out of control. I heard his voice call out to me, “Mama?”, and I realized that my tone would have to be his courage, that my strength would have to be what made him feel safe.  

The blockage of CSF circulation, hydrocephalus, was causing immense pressure. A neurosurgeon was immediately brought in. Anakin was prepped for surgery to place ventriculoperitoneal shunt to drain the cerebral spinal fluid and alleviate intracranial pressure. The neurosurgeon felt that the mass was most likely a pineal tumor, due to its region. He also suggested that Anakin be flown out for its removal, after shunt placement, to a more comprehensive children’s hospital in Houston. After Anakin awoke from shunt placement, a medical flight crew from Houston appeared in the ICU, with a carseat mounted to a stretcher. They provided such kindness and comfort to us, that I knew he was going to be taken care of. We drove in an ambulance to the San Antonio international airport, where a little airplane sat on the runway waiting for Anakin. It was absolutely surreal. Once we arrived at Texas Children’s Hospital’s ICU, I could see that we were, without a doubt, in a very capable facility, and I am forever grateful to that neurosurgeon in San Antonio who knew that Anakin needed very skilled hands. It was decided that a craniotomy would be performed to remove some or all of the mass. Oncology visited with us to prepare us for how chemotherapy would work after the surgery. A highly skilled team was assembled, which took about a week to do. In that week, our hospital room was a revolving door of specialists ranging from neurosurgery, ophthalmology, physical and occupational therapists etc. The nurses were exceptional! 

On the day of the surgery, I felt very confident, because I did not know that there would be a cerebral cavernous angioma there instead of a pineal tumor. They carried my sweet baby into the OR. I still remember the way the anesthesiologist held him close, as if he were carrying his own child to the OR. I remember how Anakin disappeared behind the double doors to where I could not cross. 8 hours of surgery went by. After the surgery, during the post-op consultation, his neurosurgeon shared with us the news. The mass was what he believed to be a cerebral cavernous angioma, an he did not have cancer. Instead it was a vascular malformation, and, additionally, he had suffered a stroke in his midbrain, because the angioma had hemorrhaged during its removal. In fact, it had probably been bleeding for some time, but was too clouded by the CSF for anyone to tell.

He was wheeled out into the PACU alongside his neurosurgical team, as they praised the strength of “the little Jedi” post-op. My little Jedi had pulled himself up on to the bars of the crib/stretcher and was calling for me. It seemed like all was fine. That night, the ICU was full, so Anakin and I slept together in the PACU. We’d waited for ICU availability throughout the afternoon. In those hours, I watched hundreds of children have their intubation tubes removed, right before their parents were called back to watch them wake up from anesthesia,with lots of hugs and kisses. Eventually, the crowd thinned out and It was just Anakin and I, and of course our nurse. He slept and slept and I was allowed to join my stretcher to his bed. We slept side by side and I cuddled him without restriction. It was perfect.

Little did I know, he would never fully wake up, not every part of him would make wake up, because that is the reality of stroke. He was finally taken to a floor where children needing to recover were taken. He battled high body temps that could only be reduced by lowering the thermostat, so much so, that the room was felt arctic freezer. He lost his ability to vocalize, including the ability to cry. He couldn’t feel pain, and seemed to have lost many of his basic instincts. He was no longer certain of who and what he was in the world (aka sensory processing disorder). He could no longer sit up or crawl. It was as if he transformed in to a 10 month old newborn. He began intensive inpatient therapy.

Within a week, he was sitting with assistance. the right side of his body suffered from hemiparesis, including the right side of his face, which now drooped. His sweet head was covered in partially shaved bald spots, which framed his stitched surgical incisions- the most pronounced being the 7 inch craniotomy incision, which was meticulously stitched with almost machine like precision. We were eventually discharged and the journey of outpatient recovery began. We learned that pediatric stroke is not considered common and so our rehabilitation facility in San Antonio would not be adequate. In fact, too many pediatric facilities are not pediatric stroke prepared. We could tell that the therapists were out of their comfort zone, because Anakin was an extreme case of something already uncommon in the pediatric world.

We relocated to the Houston, where pediatric stroke was more commonly treated. There was OT and PT twice a week. He was walking by 16 months and his OT had managed to make a connection. He could babble a bit, but all in all, he was very stuck inside himself. His speech did not develop. He presented like an autistic child and very apethetic. He had many speech evaluations, but because speech expectations are lower for babies and toddlers, he wasn’t able to get speech therapy until he had aged into a delayed status. We finally got speech therapy and it was fantastic!  He was diagnosed with an expressive/receptive speech and language disorder. I had read about aphasia and had assumed that his communication issues were aphasiac. His SLP didn’t feel that was the case. He soon entered pre-k, in to a special education classroom, with regular ed class inclusion as well. His regular ed teacher was assigned to him because she was also a special needs mom, and that was a relief. He now had speech and occupational therapy as part of his IEP.

One day after speech therapy, his SLP explained that she had performed a hearing test and that the results indicated hearing impairment. This was an absolute surprise, because Anakin had passed his newborn hearing screening, meaning that this impairment was most likely collateral from his CCM hemorrhage. We met with our local audiologist, who confirmed the impairment, but at levels that did not match the results from his initial hearing test with his SLP. She also discovered that he was reading her lips! I was shocked. With that, we then had him evaluated at a pediatric speech and hearing center in the nearest city, since we now lived rurally. The results showed profound hearing loss, which was not what the first two tests had shown. The team of audiologists were stunned and encouraged us to go elsewhere, because of the impairment’s neurological nature. We scheduled with two more audiologists, who found different results to the previous three. The final results showed that he had normal hearing function and, if anything, he had some sort of auditory processing disorder, which couldn’t be evaluated until he was 7 years old (he was only 5). We were left with nothing but inconsistency, and because of the testing that showed impairment, insurance would no longer cover speech therapy through a typical SLP.

He needed an SLP that worked with hearing impairment and APD. But he couldn’t be tested for APD until he was 7, and hearing impairment had been ruled out by that very facility who offered that type of SLP. We were stuck in a catch 22, so I began to research. I learned that a test called an auditory brainstem response, was typically performed to evaluate hearing ability, much like a newborn hearing screening. No one thought he needed this test and the battle took over a year. He was now 6 and I was prepared for his ENT visit with my stack of hearing tests and a lengthy mom speech prepared to sway the decision to the best of my ability! To my surprise, he read the testing and said, “Yeah, it appears that he really needs one- his results are all over the place.” No big mom speech was necessary. He was going to get the test with out a fight!  3 months later,  he was sedated, tested and the results were made available while we waited for him to wake up from sedation.

The audiologist was floored by his results. He said the the ABR showed damage to his auditory brainstem and stated that he could write a medical journal on his results. I showed him the MRI, which i keep on my phone, of Anakin’s CCM before resection. He said that the CCM was positioned just right for these findings. An APD evaluation was scheduled immediately, even though he was only 6 years old! The results showed that he could not sift language out of background noise. Even if the background noise was minimal and the speaker was louder than the background noise. I remember sitting in the booth with him. A voice said a few words and he repeated them, but when the smallest bit of background noise was introduced, he actually couldn’t hear the voice at all, which I could hear so clearly. It was like he was deaf in that moment. With these results, finally, Anakin was going to get very special hearing aids to help his brain hear. 

So, I feel like this photo speaks to Anakin's entire CCM journey. This photo comes at a time where Anakin has a new found awareness of his world because he can hear so much more of it. He received his new hearing aids about a month and a half ago and his ability to communicate, which was altered by his CCM hemorrhage, has taken off! He is connecting with his world and this brings about a new sense of self (as you can see in this photo). I feel like this photo speaks volumes to the struggle of CCM hemorrhage and why there NEEDS to be a non-surgical alternative.