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Hello. My name is Adrienne Adesanwo, and I am the mom of an AVM Warrior. I would say that I am pleased to make this introduction, but that would be a lie in some part, wouldn’t it? If you’re part of this community, you understand that I would do almost anything to change the outcome of our situation. We are coming up on one and a half years post rupture, and while I’ve read 100’s of articles from both the survivor and family perspectives–articles that talk about overcoming and going on to achieve great things after being in a coma for a few weeks or the hospital for a few months, great stories of surmounting obstacles and difficulties (lasting ones), publications about proving so many wrong, and how everything was such a blessing, a miracle even–our perspective is a bit different.
I would like to share our rare story with you and what it has shown me, maybe even leave those new to this life, with a reassurance that they are not alone. And especially for those in supporting roles, I offer my truth: You cannot make people better or take away their pain; you can only be present, acknowledge their situation and hold space.
Our AVM journey started on September 17th, 2021, around 8:45 in the morning. My three children were getting ready to leave for school. We had just started the school year in-person after a long 2020 virtual school year. Nathanael, one of my nine year old twin boys, was in the bathroom brushing his teeth when all of the sudden he started experiencing piercing pain between his eyes and at the bridge of his nose. I started massaging it, thinking it was a headache or sinus pressure from his allergies, and the pain seemed to get better for a minute.
We turned around to finish getting ready, but the pain returned, followed by heavy vomiting. We had evaded Covid thus far, so I thought “maybe it was our turn,” and I cleaned him up and put him to bed to rest. I then texted his teacher and those of my other children, deciding it was wiser to keep everyone home. Plan in place, my husband left to go to a dental appointment, and I finished throwing soiled laundry into the wash.
I went into the living room to check on my other children only to find Nathanael sitting on the arm of the couch watching TV. He looked like a living ghost. A gray/white color had replaced his beautiful brown face, and he had a completely uninhabited look in his eyes. I scolded him for being out of bed and helped him walk back, but his body had already started becoming heavy. No sooner had we made it back to his bed, when Nathanael collapsed. I tried to pick him up and get him in bed, but the full weight of his body was simply too much. I tried again, this time with all my might, and I barely made it. Just as I had, his body began convulsing.
I quickly pulled Nathanael back down to the floor as carefully as I could while holding his head and legs so he wouldn’t hurt himself. Just then, I noticed that my husband had returned home. As he walked into the room, I explained the turn of events and he picked up Nathanael’s convulsing body, and carried him out to the car. I called my parents, and asked them to come and stay with the siblings. There was a new problem. Nathanael’s body was so stiff that we couldn’t safely get him into the car. Instead, we carried him back inside, avoiding his brother and sister so as to shield them, and we called 911.
The Fire Department was the first to arrive. Their team tried hard to assess him, but I could tell they were nervous and frightened of treating a 9-year-old child. The ambulance finally arrived, and the paramedic got an IV in and administered medicine to calm his body. It didn’t last. We got into our first ambulance and headed for Children’s Hospital, but we were rerouted to another. Once we arrived at the hospital, a CT scan was performed almost immediately.
“Brain bleed.” “Substantial.” “We can’t treat him here.” “He needs to be intubated. Wait here!” These are not phrases any parent should have to hear. That was the last time I would see my son without some sort of tube helping secure his airway.
After intubation, they took me back to him where the head ED doctor called to secure us a spot at Children’s Hospital since they were on rerouting and not accepting incoming patients. The Child-life specialist came and tried to help as best she could. I was told they weren’t sure if Nathanael was going to make it to the next hospital and that my other children should see him in case it was the last time.
By the time our next ambulance arrived, my husband, thankfully, was able to return with our children. The child life specialist walked out with us to help explain simply what was happening, so we would not have to.
We arrived at Children’s Hospital where we signed paperwork, Nathanael was evaluated, then rushed into emergency brain surgery to save his life. A craniotomy was performed and a drain tube placed along with a ‘bolt’ to monitor and measure intracranial pressures. After waiting for what seemed to be a lifetime, the neurosurgeon came to find us. Words like AVM, rare, aneurysm, malformation, tangled vessels, catastrophic bleed, hemorrhagic stroke, and frontal lobe were tossed around like sprinkles on a cupcake. Nathanael had to have a blood transfusion, and we were told the next few days would be critical. He may or may not make it. It would be touch and go. Prepare for the worst.
We waited through the next few weeks watching as the excess blood and fluid expanded outside of his skull causing excessive swelling from his forehead down to his temple and around to the back of his head on the left side past its limit. The swelling caused his brain to shift past midline resulting in enormous pressure and causing damage to his brain stem. We watched as another rare medical phenomenon happened; his tongue swelled, protruding out of his mouth bigger than anyone had ever seen. This was due to trauma from intubation, and he now required a tracheostomy. We listened as medications were added and increased to keep him sedated and his blood pressure managed. We approved a gastronomy tube to prevent infection from his nasogastric tube. And we were present for every round and shift change, waiting for updates on treatment plans and care.
It was 21 days after Nathanael’s first surgery that we were finally able to get the rest of his hair shaved off by a kind PICU nurse. It still had blood and iodine matted in it from the craniotomy. After we carefully removed all of the hair and gunk, we saw the first three pressure sores of the seven he would come to have. Two of these went down to the bone and would take months of cleaning and debriding to heal.
Two months later Nathanael had a shunt placed because his neurosurgeon finally checked to see why the swelling wasn’t decreasing. As feared, he had developed hydrocephalus. Within a day of its placement, the left portion of Nathanael’s head completely caved in revealing the extent of his injury, and serving as the only way to remove his otherwise inoperable, unreachable AVM.
One blow after another after another just kept coming in the 291 days he was in in-patient care.
We had doctors tell us a multitude of things: They didn’t think Nathanael would live a quality life… not to expect much… Nathanael may experience severe tremors and autonomic episodes the rest of his life… He would likely be on the ventilator the rest of his life… They could replace his skull for “cosmetic purposes…” It was unbearable; but through it all, we did not give up on our boy.
This isn’t the “typical” AVM survivor story that people want to hear or go looking for when they are diagnosed, and honestly it’s only a glimpse of our own. Ours is a journey of not just one step forward and two steps back, but instead it’s been one step forward and a drop kick back. It was and is a journey of grief and loss… a journey of gaining something only to lose something else… a trading of this for that… and it’s all been while waiting on a miracle.
In the hopes that it may help you, I’d like to leave you with these tiny wisdoms about grief, trauma, processing and mental health that I’ve gleaned while becoming a medical parent:
Because of our journey, I created One Mind-Full Mama, a social space to welcome medical parents and parents of children who have medical complexities, just as they are. I believe it’s a special place–a place to hold space for grief and pain… a place to be real, honest and vulnerable about the rare disease journey when it doesn’t turn out to be the “miracle” it was supposed to be… and a place where I can share what I have learned to help the next person entering this life. Community is crucial. We're better together and it’s the only place where true comfort can be found.
So, in that spirit of community, here are some things I’ve talked about on One Mind-Full Mama that I hope will help you too:
Thank you for taking time to walk with me. Walking together is always nicer than walking alone.