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Possible Misdiagnosed Chairi Malformation
I will briefly describe below what happened to my baby girl and please tell me if I am right in thinking that she had an undiagnosed Chiari 1 malformation, and if it were treated, could it have helped in preventing her death.
She was 18 months old and learning to walk. I know this is late, but she was born at 30 weeks due to my having HELLP syndrome. She had EVERY test under the sun while in the NICU, but rarely a brain scan as she had a Grade 1 IVH which was reabsorbed a few days after birth. As with most preemies, we were hypersensitive parents and took her to the doctor for almost everything. She was delayed in walking due to I thought prematurity, but after doing research now, I am seeing a pattern as she had ataxia. When you held her left hand she could move almost without support, but when holding her right hand she would lose muscle control and almost walk in a circle.
In addition, her eyes would divert at times... One looking straight and the other going out. I took her to the pediatric eye doctor 3 times and explained that she would do this at times with associated squinting of her eyes and face. Told me it was nothing and to stop worrying.
At nine months of age she had an episode of violent vomiting followed by complete lethargy. We immediately rushed her to the doctor. He examined her and sent us to the ER immediatly because her head circumference had grown so drastically from her last visit that he believed she had hyrocephalus. Her frontal lobe had started to bulge slightly and looked a bit large to me, but I am not a doctor. We had a CT scan done and they also tested her for a UTI. They diagnosed her with a UTI (turned out 6 months later when my pediatrician finally got her records that she NEVER had a UTI) and sent us home with antibiotics. I asked about the CT and he said there was some darkness between her brain and skull in the front but it was just fluid from her forhead being large, and there were a few dark spots on other areas of her brain, but do not worry it was a UTI. I then took her to a geneticst who never even looked at the CT and she said that we probably come from a family with large heads and that if my daughter was not walking by 15 months corrected to get her physical therapy.
I always felt nervous about this, but trusted what I was told.
My daughter became ill again when she was one year old and displayed the same symptoms as she had when they had misdiagnosed her with a UTI at 9 months. I thought it was the same thing and took her back to the ER and they ran the UTI test, said she was clear, no brain scan, and then sent us home with antibiotics again.
On July 2nd, my daughter fell down while we were shopping for her daddy's birthday present. It was an accident, but she was determined to walk so we let her while holding her hand, normal baby procdure. She hit the left front part of her head on the floor. Cried and then I realized there was something not right. The ambulance came and took her to the children's hospital. They stabilized her and then took her for a scan. Very bad bleeding, and a lot of fluid...not common with her type of fall I was told. To our complete devastation, She did not make it out of surgery.
Recently we receieved the death certificate and cause of death is listed as subdural hematoma. UNDERLYING causes were subdural hygroma and thoracic hydromyelia. I began researching everything I could and all related information. Everything I put together keeps taking me back to Chiari 1 malformation. That is why I am contacting you.
Is it possible that if they had diagnosed her correctly that she could have had surgery to relieve the pressure that was obviously building up in the front part of her head and have made this fall just a fall, and not the cause of her death?
I would not bother you for anything other than your opinion, because the answers I am getting from her health care providers here are nothing. They do not even call back. I have to know if these things are related and give myself some peace.
The only thing that started me on this track was the underlying causes-subdural hygroma and thoracic hydromyelia. I noticed they were normally preexisting and not a result of a subdural hematoma. Putting all things togther about my daughters symptoms throughout her short life made me find Chiari 1 malformation and it all makes sense.
I know you are probably very busy people and if you do have time to read my story please tell me where I can get mroe information or just give me an opinion of what you think.
I thank you so much for your time and for listening to a mother who has no where else to turn.
She was 18 months old and learning to walk. I know this is late, but she was born at 30 weeks due to my having HELLP syndrome. She had EVERY test under the sun while in the NICU, but rarely a brain scan as she had a Grade 1 IVH which was reabsorbed a few days after birth. As with most preemies, we were hypersensitive parents and took her to the doctor for almost everything. She was delayed in walking due to I thought prematurity, but after doing research now, I am seeing a pattern as she had ataxia. When you held her left hand she could move almost without support, but when holding her right hand she would lose muscle control and almost walk in a circle.
In addition, her eyes would divert at times... One looking straight and the other going out. I took her to the pediatric eye doctor 3 times and explained that she would do this at times with associated squinting of her eyes and face. Told me it was nothing and to stop worrying.
At nine months of age she had an episode of violent vomiting followed by complete lethargy. We immediately rushed her to the doctor. He examined her and sent us to the ER immediatly because her head circumference had grown so drastically from her last visit that he believed she had hyrocephalus. Her frontal lobe had started to bulge slightly and looked a bit large to me, but I am not a doctor. We had a CT scan done and they also tested her for a UTI. They diagnosed her with a UTI (turned out 6 months later when my pediatrician finally got her records that she NEVER had a UTI) and sent us home with antibiotics. I asked about the CT and he said there was some darkness between her brain and skull in the front but it was just fluid from her forhead being large, and there were a few dark spots on other areas of her brain, but do not worry it was a UTI. I then took her to a geneticst who never even looked at the CT and she said that we probably come from a family with large heads and that if my daughter was not walking by 15 months corrected to get her physical therapy.
I always felt nervous about this, but trusted what I was told.
My daughter became ill again when she was one year old and displayed the same symptoms as she had when they had misdiagnosed her with a UTI at 9 months. I thought it was the same thing and took her back to the ER and they ran the UTI test, said she was clear, no brain scan, and then sent us home with antibiotics again.
On July 2nd, my daughter fell down while we were shopping for her daddy's birthday present. It was an accident, but she was determined to walk so we let her while holding her hand, normal baby procdure. She hit the left front part of her head on the floor. Cried and then I realized there was something not right. The ambulance came and took her to the children's hospital. They stabilized her and then took her for a scan. Very bad bleeding, and a lot of fluid...not common with her type of fall I was told. To our complete devastation, She did not make it out of surgery.
Recently we receieved the death certificate and cause of death is listed as subdural hematoma. UNDERLYING causes were subdural hygroma and thoracic hydromyelia. I began researching everything I could and all related information. Everything I put together keeps taking me back to Chiari 1 malformation. That is why I am contacting you.
Is it possible that if they had diagnosed her correctly that she could have had surgery to relieve the pressure that was obviously building up in the front part of her head and have made this fall just a fall, and not the cause of her death?
I would not bother you for anything other than your opinion, because the answers I am getting from her health care providers here are nothing. They do not even call back. I have to know if these things are related and give myself some peace.
The only thing that started me on this track was the underlying causes-subdural hygroma and thoracic hydromyelia. I noticed they were normally preexisting and not a result of a subdural hematoma. Putting all things togther about my daughters symptoms throughout her short life made me find Chiari 1 malformation and it all makes sense.
I know you are probably very busy people and if you do have time to read my story please tell me where I can get mroe information or just give me an opinion of what you think.
I thank you so much for your time and for listening to a mother who has no where else to turn.
I thank you so much for your kind words of encouragement and for honestly giving your opinion. I agree with you whole heartedly. I recently got my hands on all of her medical records and her autopsy. They ALL report that she had a chronic subdural hygroma (by history), increased extraaxial fluid collection over frontal lobes (preexisting), bening enlargement of the subarachnoid spaces, hydromyelia, mid and distal thoracic cord (by history). NO ONE EVER TOLD US she had any of these conditions. Our pediatrician NEVER saw these records, the ER attnding the night we went for her vey first CT back in Nov. 2007, MISDAIGnosed her with a UTI and did not inform us of her brain issues when that was the sole reason we were there.
My daughter's death could have been prevented if we KNEW what we were up against. I have read that children with these conditions need to be watched by a neurologist and that they have a difficult time in even learning to walk until these issue are addressed. I had even taken my daughter to a geneticist and she blew me off.
The more research I am doing the mroe I realize if doctors had informed me of my daughters issues, I could have been giving her her dinner right now instead of looking for reasons why she died.
Thank you so much for listening and your encouragement helps me push forward.
My daughter's death could have been prevented if we KNEW what we were up against. I have read that children with these conditions need to be watched by a neurologist and that they have a difficult time in even learning to walk until these issue are addressed. I had even taken my daughter to a geneticist and she blew me off.
The more research I am doing the mroe I realize if doctors had informed me of my daughters issues, I could have been giving her her dinner right now instead of looking for reasons why she died.
Thank you so much for listening and your encouragement helps me push forward.
I don't even know where to begin. Your story is devastating, and never - never should have happened. I am so sorry for your loss. But it sounds like, as a parent - you did everything you could. You did a wonderful job caring for your daughter and you should be very proud of yourself.
As for the physicians involved. It sounds to me like there was a HUGE lack of communication between doctors. And not a lot of attention was given to patient history. I think this could have been prevented. There were a lot of red flags in this situation. The main 2 - her developmental problems and the physical symptoms of her head. They go hand in hand. Tumors, cysts, swelling, even abuse should have been looked into. Not that I am accussing anyone - but ALL possiblities should have been considered. When a child has developmental problems - there is a reason. Especially that her head was enlarged - aren't premies generally smaller? That right there should be a red flag. Your doctors were not thorough, I don't know that your daughters death could have been prevented, and I would never make that assumption, but your doctors did not take her situation seriously, and that is obvious.
You must be going through hell right now with questions. And I am sure you want answers. But you'll never really know. All you can do is make peace with this terrible situation, and use your anger and sadness to prevent this from ever happening again. I think that you should tell your story. Every chance you get you should tell your story. Educate people about the problems within our health care system. You could really make a difference for somebody else. And it could help you to better understand what has happened.
May God be with you.
As for the physicians involved. It sounds to me like there was a HUGE lack of communication between doctors. And not a lot of attention was given to patient history. I think this could have been prevented. There were a lot of red flags in this situation. The main 2 - her developmental problems and the physical symptoms of her head. They go hand in hand. Tumors, cysts, swelling, even abuse should have been looked into. Not that I am accussing anyone - but ALL possiblities should have been considered. When a child has developmental problems - there is a reason. Especially that her head was enlarged - aren't premies generally smaller? That right there should be a red flag. Your doctors were not thorough, I don't know that your daughters death could have been prevented, and I would never make that assumption, but your doctors did not take her situation seriously, and that is obvious.
You must be going through hell right now with questions. And I am sure you want answers. But you'll never really know. All you can do is make peace with this terrible situation, and use your anger and sadness to prevent this from ever happening again. I think that you should tell your story. Every chance you get you should tell your story. Educate people about the problems within our health care system. You could really make a difference for somebody else. And it could help you to better understand what has happened.
May God be with you.
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