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 I can even leave those new to this life with a reassurance that they are not alone and 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:
- Grief is a natural response to trauma and there is no set amount of time for when it should be gone. People don’t only grieve death; we grieve loss. As parents of children who have suffered brain injury, we experience profound loss and the related grief over and over. We are not broken for experiencing any of the feelings that come with this journey. Repressing them will only make the pain and loneliness worse. I recommend you connect with a few other people who will listen, acknowledge, and accept your truth without correction, judgment, or pointing you to a response they feel you should feel. Community is key.
- People are uncomfortable with trauma and grief. Some will leave at the first sign of it. Communicate clear boundaries for those that chose to stay. Tell them what you need. It will change as time goes on. Let your people know you cannot take on the burden of always updating your needs. To have it laid at your feet will likely be beyond your bandwidth. Often you will need them to anticipate.
- There will be waves of what your mind lets in. You can only process so much at a time. Allow it in as it comes so you will be able to grieve. If you don’t, you will have to deal with it later. Letting it in helps even though it feels like it’s killing you.
- A person will often limit another’s grief because it makes them uncomfortable. Don’t let it make you feel less in any way, not less faithful, less hopeful, less deserving, or less of anything.
- People will try to be positive about your circumstances because they don’t fully understand that sometimes there is nothing good and that’s an acceptable and truthful way of feeling. You don’t have to always find the silver lining.
- It is not your responsibility to let other people know what’s going on all the time. Even if they are praying, giving, or serving you in some capacity. There will be times when you need to pull back and that’s okay.
- If you have other children, let them see you grieve. They need help learning how to deal with it all. This will show them it’s okay.
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:
- Sit on the bathroom floor (or wherever you have a place to yourself) to weep and grieve. Do not hold it in all the time (see #3 above).
- Write everything down! This way it doesn’t have to hold space in your mind. Whatever it is, it doesn’t matter; just write it down and remove it from your mind so that you can focus on what matters in the moment.
- Take the kindness people want to give you. It will help them feel like they are making a difference, help lighten your load, and it will keep you connected to something other than the pain.
- Take care of the people who take care of you. The nurses and care providers who are there for you are also there for so many others. Thank them. Make small snack bags or gift cards to show appreciation. Leave thank you cards when you move on, or anything else you can do to show your gratitude. It will help staying at the hospital or having people come into your home feel less impersonal and intrusive and more like family.
- Find some music that speaks to you and speaks to your survivor. Music soothes the soul, touches the spirit and comforts the mind with cherished memories. It can also help bring out stuck feelings while you are busy taking care of so many other things.
- Advocate. Advocate. Advocate. Speak up because no one else will. You know your child best; believe me.
- The more you organize your supplies and your life, the more you can stay focused and ease your mind. Whiteboards, calendars, cube storage, whatever you feel comfortable with and will use, they will all help calm the fear of missing something crucial.
Thank you for taking time to walk with me. Walking together is always nicer than walking alone.