It’s every parents worst nightmare. A PA at a local hospital walks up to you and says; ‘ We found a mass in your son’s brain. We need to get him to All Children’s Hospital stat. He’ll be going by ambulance, they’ll arrive in about 15 minutes.’
My first thought was ‘ Oh my God! My son has a brain tumor! ‘
Rewind back 3 years. My son Brandon seemed perfect in every way. His older brother had been diagnosed with Autism at an early age but that affliction seemed to skip my youngest son. Brandon walked, talked, and met his goals at appropriate ages. There did seem to be one thing however that concerned me. He would complain of a ‘ tingling ‘ in his left arm. Sometimes while saying this he also added that his vision ‘ tilted ‘. Occasionally that was preceded by a pain in his head on the right side.
These incidents were short lived. His speech started to suffer a bit as he got older. Concerned I got his pediatrician to recommend him to a neurologist. The neurologist did not order a CAT scan or MRI. Instead he checked Brandon’s reflexes. Shined a light in his eye and declared him ok. I was advised to take him to the hospital if the incident happened again and lasted longer then 5 minutes.
I was not happy but rather then seem over protective I bowed to the expert. I wish now I had listened to my own instincts.
Now fast forward. My son is 10. He had contracted a nasty case of the stomach flu. After vomiting about 6 times I took him to the ER. Besides his stomach he has constantly complained about the tingling and numbness on his left side. I relayed that to the PA on duty who tried to assure me it was due to mild dehydration.
This time I refused to take a glib answer. I insisted that they do a CAT scan or an MRI. These things have been happening even before he had the stomach flu and although they went away on their own I knew there was something wrong. I just didn’t know what was causing it. The staff tried to talk me out of it pointing out that ever since they started treating him for dehydration he was no longer complaining of any of those symptoms. They even went so far as to try to throw a scare into me by stating that it was dangerous to expose a little boy to radiation if there was no need for it.
I stuck to my guns. There was a lot of mental eye rolling while they scheduled the MRI. An hour later the PA comes in looking abashed and tells me that a mass has been found and we will be transferred to All Children’s Hospital in Tampa. I remember being too numb to cry. I called my husband and asked him to pack a bag for our son. I called my aunt and listened as panic spread through my close knit family. Then I walked in and looked at my beautiful baby boy eating a popsicle and charming the nurses. My heart broke.
I prayed. The entire ride to the children’s hospital I prayed. Brandon was admitted and he was there for almost a week while various tests were run. He had CAT scans, MRI’s with and without contrast, he had an angiogram done, and his reflexes were checked. Finally they explained to me what the mass was.
My son was diagnosed with a AVM also known as arteriovenous malformation. I had never heard of it but this is how it was explained to me. This is a deformity of the vessels which causes them to connect to one another in ways they are not supposed to. They put the person at a very high risk for stroke. My son’s AVM was 3cm by 3cm very large and on the MRI it looked like a very tangled ball of string. One vessel near the middle was as thick as my thumb.
I was relieved it wasn’t cancer until I realized that this diagnosis was the equivalent of saying my son was walking around with a time bomb in his head. I asked the doctors to remove it and was told that the AVM was located beneath healthy brain tissue and if they cut into it they risk leaving Brandon blind or paralyzed. I was also told because Brandon is still growing the defect will continue to grow and change. Once he reached 21 the brain would stop growing and from there they might be able to look into treatment.
I was soon hit with another whammy. Because of all the extra blood being pumped where it wasn’t needed his heart was going to start enlarging. They did a sonogram of his heart and advised me at the moment he was fine. It was recommended that Brandon not engage in recess or sports. I informed my son who took it all in stride merely asking me if he was ok. I assured him that right now he was ok. I didn’t tell him about my fears for the future.
My son is now 14. A friend of mine lost her daughter to the same thing my son has. Her daughter was only 19 and suffered the rupture of the blood vessels in her brain while she was sleeping. That age doesn’t seem so old to me. Not with my son creeping up on 15. I prayed every night after I tucked my son in bed that Brandon would open his eyes and greet me in the morning. I would then sweat all day waiting for ‘ that ‘ call from school. The school was made aware of Brandon’s medical condition and had sent him to the ER via ambulance once when Brandon passed out in class.
I’ve also prioritized his illnesses. Once upon a time I would have panicked if he scraped himself. I would have been worried about germs causing something serious. Now I can shrug it off because I have a much bigger worry that is real and valid. Brandon started stuttering about two years ago. Each year it’s gotten a little worse so I worry a little more about what kind of pressure on his brain this vessel is causing and how much more damage might it do? He sees a neurologist every year and a cardiologist every three months to monitor his condition.
Modern medicine is a wonder to behold. So I continue to hope that a treatment might available to my son soon. In the meantime the doctors have told me that there is nothing that will cause the AVM to bleed and that it could start bleeding even if he spends his life on a couch. This caused me to loosen up a little and allowed him to go out more. To run around outside. I’ve even given him permission to engage in some games at school.
I do this not just because of what the doctors have said but because my son has looked me in the eye and held me in his arms and told me if I really want him to live…..then let him live. Living inside a glass bubble made of fear is not living at all.
I still pray every night and sweat every day but we are starting to take comfort in the fact that Brandon is making the most of his time and he’s happy. Maybe one day I’ll no longer have to worry about burying my son. The doctors didn’t have to point out to me if the large vessel ruptured there was a good chance my son wouldn’t even make it to the hospital. I figured that out after I went through medical cases and spoke with other people whose children are or were afflicted with this. Until and if that time comes I’ve told myself I won’t smother him anymore. Sometimes though, I can’t help it.
Here is an excellent resource on AVM symptoms and treatments. Remember, you are the parent you know when something is wrong. I sometimes wonder if I could have done something more if we had discovered this sooner. Now I try to focus on giving my son the best life I can. We don’t take every day for granted like we used to. Hopefully no matter what happens I can reach other parents and make them aware of this medical issue and perhaps help them get a proper diagnoses sooner.