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 fiancé called 911 and I did my best to try to 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 fiancé, 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.
- Unspoken Emotions
I have written a hub about the condition my youngest son has called Benign Enlargement of the Subarachnoid Spaces, but I have not discovered a way to get past the hidden emotions I still carry from our...
What is BESS?
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.
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.
Here is a hub by Terri Meredith that is full of interesting facts on SBS
- Shaken Baby Syndrome - Manmade Myth
Recent medical research has cast a shadow of doubt that is fast becoming a blanket of darkness over the question of whether Shaken Baby Syndrome is a reality or a dangerous synonym for I don't know what...
Katie on January 27, 2019:
All- my son has BESS and he is a normal healthy 3.5 year old with a big head. No draining was necssary, no helmet. Was told brain bleeds were extremely rare and we never worried about it.
Jill Kostowskie (author) from Pennsylvania on January 28, 2015:
Please send me a friend request on Facebook or send me an email.
K.Frazier on January 24, 2015:
My granddaughter is going through the same thing right now. She has always been a fussy baby (she is 4 mos.) my daughter has taken her to the pediatrician and even the ER for her inconsolable crying. All she ever got was she has colic, gas, reflux, etc. . The pediatrician has even commented on how big her head is. I noticed about a week ago her fontanel was bulging. I told my daughter and she took her to the ER where they diagnosed her with a new and old subdural hematoma. My daughter has no known cause for this so they immediately accused her of child abuse! The so called child abuse doctor is one of the most arrogant, condescending person I have ever met. She insists that someone shook my granddaughter even though no one did. They have taken her from my daughter and given temporary custody to my mother because she has been in contact with my husband and I and they don't " know who did it". The doctor even said "well, we know you didn't cause the new one we can't rule you out on the old one" . DCS is taking everything she says as the gospel truth and not even listening to us about a second opinion or alternate diagnosis. When I look back on all the the symptoms she had from birth they are all symptoms of BESS! This is such a nightmare and we just don't know how to end this! This is crazy and we don't know where to turn. They are even telling my daughter she can't see her medical records even though her parental rights have not been taken. We do know the baby has no other injuries like broken bones, skull fracture, or retinal hemorrhage. We are just heartbroken and lost!
Jill Kostowskie (author) from Pennsylvania on August 14, 2014:
Amanda - I am not sure what you can expect because my son is only 6. You can send me a friend request on facebook if you would like.
Amanda on August 14, 2014:
My almost 10 year old has been suffering from daily headaches for the last week, dizzy and weak legs they did a MRI and found she has an asymmetric enlarged subcharnoid space in the left posterior region just above the parietoccipotial fissure. They said it was caused in utero or old injury. What should I expect at her neuro appointment on Monday?
Jill Kostowskie (author) from Pennsylvania on May 31, 2014:
Please contact me on facebook. Jill Kostowskie Haldeman
Cass on May 31, 2014:
My 8 month nephew was diagnosed with BESS and meningitis by our local hospital. He was transferred to Nashville Children's hospital and a MRI was done which stated that he had a hematoma. The parents were then accused of NAT. The child has never had a fall. He was born 8 weeks prematurely. He has been in and out of the emergency room for persistent fevers, especially after vaccination shots. The hospital claimed that he might have a broken bone to support their abuse case. A second opinion was done at our local hospital. They did a skeletal X-ray and found that there was no broken bones or fractures and there has never been. The Nashville hospital did retracted their earlier statements of a broken bone and said that the spot that they saw just may be a normal bone growth. The family is still going through a nightmare.
Jill Kostowskie (author) from Pennsylvania on April 27, 2014:
Angel - you can email me at email@example.com or you can send me a friend request on facebook.
Angel on April 16, 2014:
Hi Jill. Thank you so much for your experience. My granddaughter has the same type of experience now. My granddaughter fell off the bed and hit her head on the carpet. We had the same reaction as your son. Tok her to the ER and they said she had bleeding and old bleeding and said she was abuse Subs. My son and wife are going through hell with CPS. we had to hire an attorney for them. It is frustrating to know that these half ass doctors don't know about BESS. the are already ready to say the child is abuse. We all need to get together and form some type of awareness programs for BESS and made it know. CPS is always ready to say child is abuse and put them in foster care. My two grand children are in foster care and we know they were not Abused. I need to gel I touch with u to talk about this
For one parents who are out their who are suffering at the hands of CPS and some doctor who knows about BESS, we need to educate them.
VanessaMorgan on November 26, 2013:
I found the page and sent you a message. Thank you so much! It has been a crazy few days around here.
Jill Kostowskie (author) from Pennsylvania on November 21, 2013:
He had head taps done through the soft spots on his head. If you use facebook you can send me a friend request and i can add you to a group with other people with similar experiences.
VanessaMorgan on November 21, 2013:
Jill how did they drain your sons fluid? Was it with a. Shunt? My son has this or something similar, I would love to touch base with you about all of this , I am very freaked out right now.
Natalie on March 02, 2013:
Just come across this article. Your story almost mirrors what we have just gone through with one of my twin babies.
My little boy was 4lbs at birth, and suffers from reflux. But a healthy strong baby now at 4 months, but at 10 weeks I fell down the stairs carrying him, he fell on his head, went straight to A+E, did a CT scan which revealed the bruising and slight bleed to brain, but also a 'grey area' ( BESS) which then triggered social services to 'imprison' me, my husband and both my twins in hospital for 4 days till an MRI could be preformed.
Even now 8 weeks on we are both still suffering emotionally with what we went through at the hands of the hospital and social services, been accused of abuse at a time when you are vulnerable and worrying your child could have something seriously wrong is not ok!
Jill Kostowskie (author) from Pennsylvania on June 18, 2012:
Tiffany, We were told that regardless of wearing a helmet or not the risk of bleeding is still there because the veins within the head are stretched more than normal. A helmet can not protect against this type of bleeding because it is the back and forth motion that causes it and not the bang of the head itself. I am sure that he will develop normally especially being that you got a diagnosis early. Did they mention anything about having to remove fluid? My son had to have fluid removed several times. Feel free to contact me through email if you would like to talk more.
Tiffany on June 18, 2012:
Thank you so much for sharing your story. I am so glad he is doing amazing. Your story is very inspirational. My son had a MRI a few weeks ago. It found that he had benign extracranial hydrocephalus. He is almost 18 months and the neurologist felt he had BESS. He also has hypotonia and delays in gross motor skills and speech. I asked the nurse who gave me the MRI results if benign extracranial hydrocephalus was like BESS and she said that's "exactly" what it was. So I been trying to find everything I can. My big concern is the risk of bleeding. Did your doctor recommend a helmet to protect his head? I just hope once the fluid goes away his skills will catch up since they all seem to be linked together. He is super smart, but is getting frustrated. PT has helped a lot so we hope he'll walk soon. Thanks for posting this. It's scary and you just don't here about it.
Jill Kostowskie (author) from Pennsylvania on March 08, 2011:
Tanya - I am glad to hear the extra fluid may have reabsorbed. We just had our sons final MRI a few days ago. All the extra fluid is gone, and there is no longer an enlarged space in his head. He finally falls within the normal limits for the space and is no longer at a risk for a subdural hematoma. Thanks for commenting on my article!!
Tanya on March 08, 2011:
My daughter had an MRI at 28 months to look for the cause of her low muscle tone and large head (98% head to 4% stature). The MRI showed BESS with extra-axial fluid collection. SHe had another MRI 4 weeks later since that first one also showed a flattened pituitary. This MRI did not mention the BESS and specifically said no extra-axial fluid collection. The 2nd MRI was targeting the pituitary, so not sure if it was missed or the fluid collection had reabsorbed that quickly. She is now 3 years, 3 months and the neuro did not feel another MRI was warranted at this time.
Jill Kostowskie (author) from Pennsylvania on January 15, 2011:
Lynne - I am sorry to hear about your sister's baby. I can relate completely to what your family is going through. I live in Pennsylvania. It took months before we had our diagnosis. Luckily in our case we were able to keep our kids in the home with supervision. Once the new bleeds were discovered they realized it was not SBS, but it was the pediatric nuerosurgeon who was on our side..not the original doctor. I would suggest seeking a second opinion from a nuerosurgeon and I would go to a children's hospital. I would also fight for MRI's to be done instead because CT scans give off a lot of radiation.
Let me know if you need any more info. I hope everything works out, I know it is hard but be patient.
lynne on January 15, 2011:
my sister and brother in law are going thro this and baby has new bleeds while being in foster care and they are still saying sbs because dr does not want to admit they are wrong. they did another surgery and will not do mri only ct. what state are you in?
Sara on September 13, 2010:
I am glad your son is doing well. This is a very inspirational article for others to know they could over come a similar event.
Jill Kostowskie (author) from Pennsylvania on September 09, 2010:
Amanda, I am sorry to hear what happened to your daughter, but I am glad she is doing well!!! The best advice I can give you with CPS is to just hang in there. I know right now it feels like a nightmare that will never end, but in due time it will. It is very good that they were able to diagnose her right away, I know for us it took 6 months to find out, and we had the constant worry that something bad was going to happen to him. What I learned from this experience is how strong of a person I am, and I know in time you will feel the same. You are not alone!!! I wrote about this subject for other families, like yours, to know that someone else made it through the same experience. Good Luck with everything and just hang in there!!!!!! :)
Amanda on September 09, 2010:
I just want to say I know exactly what you and your family went through,unfortunately we are going through the same thing right now.My daughter is 4 1/2 months old and i fell on the stairs wih her. she never hit her head but the jolt of me falling was enough to cause a subdural hematoma.in our case we found out right away that she has bess but that hasn't stopped cps from making our life a nightmare.i hope soon it will all be over and we can get back to our lives.our daughter is doing much better but i'm constantly worried about her.thank you for sharing your story.
Jill Kostowskie (author) from Pennsylvania on August 13, 2010:
Thank you, He is doing well and he is your average 2 1/2 year old.
lcbenefield from Georgia on August 13, 2010:
I'm sorry for the torture you went through with your son. I hope he is doing better.