(reposted as shared by Taylor's mom, Jennifer, on Facebook)
I know a lot of people are still under the impression that Taylor had meningitis when she passed away. Honestly, that was just the best guess Vanderbilt could come up with to explain it. A "guess" wasn't going to be good enough for us. We consented to a brain autopsy to see if they could find any other explanations...and a more concrete answer for us.
No sign of meningitis was found. The findings were as follows:
Findings and Diagnosis: "Focal Cortical Dysplasia", left middle frontal gyrus
Clinical history of prolonged status epilepticus and terminal multiorgan failure
Acute hemorrhage, left caudate, right middle frontal gyrus
No evidence of encephalitis or active infectious processes
Discussion and Cause of Death Statement:
Microscopic examination of the brain demonstrates a focus of focal cortical dysplasia in the frontal lobe. It is a non-neoplastic developmental abnormaility where the neurons are large and disorganized. Areas of cortical dysplasia often result in prolonged seizures. It is likely that this area of cortical dysplasia served as the nidus for the patient's seizures.
Of course, this is only a small portion of the autopsy report...it is almost 4 pages long with a lot of techinical terminology that we didn't understand. When it was explained to us by the doctors the conclusion was this: there is NOTHING more that could have been done by Vanderbilt, family, or Taylor. The mortality rate of children with this abnormality is only 15%. Each seizure Taylor suffered in her lifetime could have been "the one" that took her life. We were very fortunate and blessed to have her for 14 wonderful years! This abnormality forms in a part of the brain that develops in the first trimester of pregnancy. It is possible that the on-set of puberty and her using more of her brain during so is what caused this final uncontrollable seizure.
The autopsy at least gave us some comfort; knowing that we did all we could have possibly done for our daughter was helpful in alleviating some of the "what if's" we have struggled with.
Her father,CJ, Nana, and myself all did exactly as we should have done that weekend...we comforted our baby and assured her that all would be okay. Even though "ok" for us never actually came...I am sure of the fact that Taylor is now "ok".
Another awesome fact: I spoke with Vanderbilt Organ Donor center today and Taylor's heart has been used to save at least 40 lives so far! Her corneas helped a woman with cataracts to be able to see again! Even from the grave she is helping others! That fact amazes me!
No sign of meningitis was found. The findings were as follows:
Findings and Diagnosis: "Focal Cortical Dysplasia", left middle frontal gyrus
Clinical history of prolonged status epilepticus and terminal multiorgan failure
Acute hemorrhage, left caudate, right middle frontal gyrus
No evidence of encephalitis or active infectious processes
Discussion and Cause of Death Statement:
Microscopic examination of the brain demonstrates a focus of focal cortical dysplasia in the frontal lobe. It is a non-neoplastic developmental abnormaility where the neurons are large and disorganized. Areas of cortical dysplasia often result in prolonged seizures. It is likely that this area of cortical dysplasia served as the nidus for the patient's seizures.
Of course, this is only a small portion of the autopsy report...it is almost 4 pages long with a lot of techinical terminology that we didn't understand. When it was explained to us by the doctors the conclusion was this: there is NOTHING more that could have been done by Vanderbilt, family, or Taylor. The mortality rate of children with this abnormality is only 15%. Each seizure Taylor suffered in her lifetime could have been "the one" that took her life. We were very fortunate and blessed to have her for 14 wonderful years! This abnormality forms in a part of the brain that develops in the first trimester of pregnancy. It is possible that the on-set of puberty and her using more of her brain during so is what caused this final uncontrollable seizure.
The autopsy at least gave us some comfort; knowing that we did all we could have possibly done for our daughter was helpful in alleviating some of the "what if's" we have struggled with.
Her father,CJ, Nana, and myself all did exactly as we should have done that weekend...we comforted our baby and assured her that all would be okay. Even though "ok" for us never actually came...I am sure of the fact that Taylor is now "ok".
Another awesome fact: I spoke with Vanderbilt Organ Donor center today and Taylor's heart has been used to save at least 40 lives so far! Her corneas helped a woman with cataracts to be able to see again! Even from the grave she is helping others! That fact amazes me!
In loving memory of Taylor Michelle Brown
6/5/95-5/29/09
6/5/95-5/29/09
Additional comment:There is no way to "be aware" of this abnormality unfortunately. It is only seen under Microscopic viewing of that specific brain location...only during autopsy. It is believed that a lot of babies diagnosed with SIDS actually had this abnormality...there is no way of really being certain because most families will not consent to brain autopsy on ... See Moretheir babies. I certainly don't blame them for not wanting to do that. I respect their decisions...but unfortunately that is the only way to save other lives and start really looking into this so we can develop a way to prevent it or at least detect it before it's too late. Dr's said even if they HAD been able to detect it sooner they would not have operated...would have to resection too much brain and would have decreased quality of life by too much.
