Benign Enlargement of the Subarachnoid Spaces or BESS Syndrome, infant brain

This is a topic that is very hard for me to write about because it took a great toll on my family. I just want to give a little bit of history before I get started. My youngest son was born February 7, 2008. He was born at 31 weeks and 6 days making him 2 months premature. He was delivered by emergency C-section and was pretty healthy, he weighed 4 pounds and 1 ounce. He spent about 3 weeks in the NICU before he was allowed to come home with us. He had to learn to eat and keep his body temperature up. The only problem we were aware of is he had reflux. He had to take prevacid to help him with this because the reflux would make him scream and make it hard for him to breathe.

As he was growing month by month he was hitting every milestone on time or even slightly before. I would joke that he was very advanced especially because he had an early start at life. What we didn't realize at the time was that his head was also growing at a rapid pace. On the growth chart from the doctors office it looked like a straight line upward instead of the normal curve. By 10 months of age our whole life was turned upside down. On December 10, 2008 he was standing at a babygate in our parlor, when the gate came loose and he fell straight backwards from a standing position and hit his head on the carpeted floor. He began to cry very hard. Within a few minutes his body started to tense up and he began having what we feel was a seizure. My fiance called 911 and I did my best to try and find out what was wrong with my baby. He was taken by ambulance to our local ER. The ER doctors gave him a CT scan and quickly realized he had a bleed in his head between his brain and his skull. He was then transported by ambulance to a Children's Hospital about an hour from our home. I went with him in the ambulance completely terrified.

Upon arriving at the Children's Hospital another CT scan was ordered, also they performed X-rays of his entire body. Every bone, every inch. Once he was admitted to the hospital and given a room the doctor who was overseeing his care finally met with us to tell us what was going on. He told us they found a new subdural hematoma, and they also founds signs of old subdural hematomas. He also said his head was larger than normal due to the bleeding that has been occurring inside.

The doctor in charge of my son also happened to be the hospital's Child Abuse Expert. The only diagnosis he could come up with in the week to follow the fall was my son is a victim of Shaken Baby Syndrome. WHAT??? Also, that this abuse has been going on for months due to the signs of the old bleeds. Anyone who was alone with my baby since he came home from the NICU now had to be supervised around the clock until they figured out who was doing this to him. They were concerned of myself, my fiance, my grandmother, and my parents. We had to have a relative move in, and we had to constantly be in contact with our Children and Youth Case Worker.

This went on for quite sometime, until he had another MRI preformed which showed two more new bleeds since the last one. The Doctor said he made a mistake it is not shaken baby syndrome, but he was not sure exactly what it was. He did some more tests but it would be weeks for some of the results. The Children and Youth case worker closed her case, due to the fact of no abuse.

Finally in June of 2009 we got a diagnosis following another MRI. We were told he has Benign Enlargement of the Subarachnoid Spaces or BESS. We were given a piece of paper describing it and we were on our way. The ride home was mixed emotions, happiness because my baby is OK, and it is not something that can kill him. Anger at the doctor for putting us through the hell of being accused of child abuse. Sadness for time that was missed out on with the kids. And relief because we can now go back to enjoying each other and our family.

 Benign Enlargement of the Subarachnoid Spaces.  The space between the brain and the skull are larger than normal, which then stretches the veins within that space.  A bleed from these veins could happen at any time and for any reason causing a subdural hematoma.  In our sons case the fall may have caused the bleed detected on the CT.  But the doctors also informed us it may not have caused the bleed, it could have happened spontaneously.

I can not find the actual paper from my doctor with the facts but recalling from memory it affects about 17% of infants, mostly males.  It most of the time goes unnoticed, unless there is a need for a scan.  By the ages of 2 and 3 the children grow out of it because their brain grows to fill the space that was empty. 

January 2011

We are now waiting for what we hope to be our son's last MRI. Since his diagnosis he has been getting MRI's done periodically to make sure there is no new bleeding. This is a precaution because as a child grows from an infant to a toddler the bones in the skull become harder and fuse together. Once the bones fuse together there is no way for the skull to expand to make room for the added fluid or blood. If there would be excess fluid and the skull was unable to expand it could cause life-threatening complications, or life-long disabilities.

So far everything has been fine with our son. He is the smartest 2 year old, almost 3 year old, that I know!!! (impartial because he's my son, no offense to others) So we are keeping our fingers crossed that there is no new bleeding and we are also hoping that the extra space in his head is completely gone. If it is completely gone then we will be in the clear!!! If it would not be gone it would mean we did not reach the end of our journey yet and he will need to have another MRI.

The MRI is scheduled for March 2011. I will update you then.