Taylor, One of Many Honored in Donate Life Celebration

A message from Jennifer, Taylor's mom:

Just months before Taylor passed away, she was looking at my driver’s license and asked me what the heart up in the corner of my photo meant. I showed her the back of the card and explained to her that the heart alerted others to the fact that I had registered with the DMV as an organ and tissue donor. Of course, this led to more questions about what organ donation was and how you signed up to do it. I told Taylor that when you die, you no longer have any use for any of your organs. Your body is laid to rest and simply perishes and returns to dust…back from whence it came. She thought the idea of anyone having to THINK about donating their bodies was silly. Her exact words were “I’m not gonna need any of it in Heaven so why wouldn’t I give it to someone else here on earth that can still live?”. My sentiments EXACTLY, Taylor!

Taylor’s father and I did not hesitate when it came time to answer the question “would you be willing to donate any of your daughter’s organs”. In fact, I think the moment they told us that Taylor wasn’t going to make it, we both looked at each other and asked the doctors if we could donate her organs even before they asked. I knew about a week before the doctors told me, that Taylor wasn’t going to make it. I still spoke of hope to others…but in my heart, as her mother, I knew she wasn’t coming back home with me. My conversation earlier that year with Taylor regarding this subject made it a very simple decision for her father and I to make.

We received an invitation in the mail about a month ago to attend the “Thanks for Giving” ceremony in Nashville. The weekend before last, members of Taylor's family and friends of the family came together with other families whose loved ones were honored as organ or tissue donors, at an event sponsored by Tennessee Donor Services (http://donatelifetn.org/ ). Many donor recipients were also there to talk about how thankful they were that their lives were either improved or saved by others' selflessness.

Taylor was one of more than 150 donors honored. Her name and photo were displayed on the stage screen, as a brief memorial was read. Matthew and I each received a certificate of thanks and a bronze medal, in Taylor's honor. Crissy and I made the family all t-shirts adorned with Taylor’s picture and the quote “If I could sit across the table from God, I’d thank Him for lending me YOU”. I also made a hand-made quilt square with her photo and some of her favorite things bedazzled on (think peace signs and butterflies :-). The quilt square will join hundreds of others in one large blanket that will travel around the world on display, so that others will know Taylor and just some of what she gave the world.

To date, Taylor’s “gift” has saved or improved the lives of 42 people. Her corneas were given to an elderly lady so that she could see better. Parts of her heart were distributed among 41 others in an attempt to either save lives or improve the quality of life.

Would we selfishly take it all back if we could have her here today? Certainly. We miss our smiling, silly, vivacious girl! But that was not a part of God's plan.

Today, others live because of Taylor’s decision to give selflessly. I ask that each of you think and pray about what a difference you can make in the lives of others even after you are gone. If you can make that selfless decision and give the gift of life to others after your own death, please go to http://donatelifetn.org/ and register as a donor.

***One thing I didn’t know before this ceremony is that you CAN donate your skin, tissue and bones and still have an open-casket funeral. They perform the surgery so that it is undetectable during the funeral.

This is a poem my sister found on the internet regarding organ donation:

TO REMEMBER ME

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.

At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine, and don't call this my death bed. Let this be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.

If by chance you wish to remember me, do it with a kind deed or a word to someone who needs you. If you do all I have asked, I will live forever.

Robert N. Test
Contributed by Fran Sawyer --- Florida

Autopsy Results - Taylor Helps Others

(reposted as shared by Taylor's mom, Jennifer, on Facebook)

Friday, February 19, 2010 at 1:04pm

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!

In loving memory of Taylor Michelle Brown
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.

February 19 at 2:23pm ·

Thank You Again

Taylor's family continues to be overwhelmed by the generosity and thoughtfulness of extended family, friends, and even strangers who have come forward to offer support.

The benefit was a wonderful and touching event; Taylor's friends (and their parents) continue to check in on Jennifer; and anonymous donors have provided everything from sweet condolence cards to a vase for Taylor's grave site.

I can't say that as time goes on it gets any easier... for many who were closest to Taylor it actually has gotten harder. There are good days and bad - but never a day without her on our minds and in our heart. The best days are when something strange and funny happens, as if her mischievous spirit is reaching out to us :-)

Concert for Taylor; June 23rd 6-8pm

The Brown family has some wonderful friends in Nashville. Taylor grew up listening to these folks; they even wrote a song about her, years ago. Now, this coming Tuesday, June 23rd, they will host a concert in her honor... (see portions of the poster below)

Remembering Taylor on Her Birthday

Today Taylor would have been 14 years old. That's a hard pill to swallow - and something that's been on my mind all day long. I could not think of the words or actions fitting enough to pay to tribute to her or to comfort Jen and Matthew.

So, I will say what another good friend of the family said... "knowing her and losing her has been a life-altering experience." It's made me rethink about priorities and how I've been living my life lately. It's made me pay attention more to others that may be walking by in the store and engulfed in their own life struggles - and to offer small kindnesses in response, as my own way of paying tribute to Taylor and all the good people who helped our family during this difficult time.

Through this whole ordeal I have been in awe of Jennifer, Matthew, Dan, CJ, and Taylor's grandparents. They have acted with such grace and strength.

The services on Taylor's behalf were beautiful, too. We are all thankful for the many people who attended and have shown their support in other ways. I know that Taylor is so proud! I know she feels our love today.

Aunt Janet

As most of you already know, my little angel, Taylor Brown is now one of God's little angels. She passed on Friday, May 29th at 1:25pm. It was very sad, yet very peaceful as well. The staff at Vanderbilt Children's Hospital did such an excellent job, first at caring for Taylor, and then also at helping our family through the process of letting her go on to Heaven. They definetely showed us that this is not just a JOB for them...they care deeply about their patients and mourned our loss with us.

I got a very special "gift" from Taylor before all this happened. One day in the car, she started talking about what she wanted her funeral (or PARTY, as she put it) to be like. She specified that she did not want to be cremated or buried in the ground...she wanted to be in one of those "drawers in the wall thingys"! She also said no one was allowed to wear black or cry....I know we are going to shed some sad tears but we also would like to shed some happy ones remembering the good times and how much joy she brought into our lives!

Arrangements are as follows:

"Celebration of the Life of Taylor Brown"
When: Monday, June 1st @ 6pm
Where: LifePoint Church (formerly FBC of Smyrna) on Legacy drive in Smyrna, TN

"Memorial Service and Final Placement"
When: Tuesday, June 2nd (Visitation begins at noon and will continue until the service begins at 3pm)
Where: Mount Olivet Funeral Home on Lebanon Pike in Nashville, TN

REMEMBER...NO BLACK! Wear bright colored, celebratory clothing to BOTH services!

EVERYONE is welcome to come to both. Even if you never actually met Taylor or our family, we would certainly love to meet you and thank you in person for your prayers, donations, love, and support!

Sincerly,
Jennifer Brown-Seal

To Those Who Loved Taylor

jennifer and matthew thank everyone who kept taylor in their thoughts and prayers. miss taylor passed away today at 1:25 pm. she went very peacefully. her family was with her the whole time. taylor will live on in all our hearts; so for anyone who knew taylor and shared her hopes and dreams please live them for her. may God bless taylor and everyone who loved her.....

Missy Davis

God's Newest Angel

Taylor is not going to be able to join us again. The doctors say that she is really already gone - that taking her off of life-support will really just be a formality.

There are no words to express how very sad I am - sad for the friends and family who will miss her so intensly much - sad for the fun we'll miss out on from growing older with her - sad especially for Jen, Matthew, and Taylor's grandparents.

I know that Taylor would not want us to be sad for too long, though. She hated to see her mom cry. She hated to see anyone cry. She was often a good friend whom many could share their problems with - she'd be the shoulder they'd cry on while she listened - she'd be the one who'd cheer them up by saying or do something silly. She was a wonderful girl who adored her parents, grand-parents, aunts, uncles, nieces, nephews, and friends. She often formed close relationships with her teachers and neighbors who knew her well. She was very thoughtful - always making the sweetest homemade gifts and cards.

She will most certainly be one of God's most beloved, beautiful, joyful, and sometimes delightfully mischievous angels.

Thursday 05/28 - together today at 4pm (Ga time) 3pm (Tn time)

We found out this morning that the new medicine did not work.

Everyone - if you could - please take a moment around 4pm (GA time)/ 3pm (TN time) to pray for our miracle. The doctors will gather around that time to meet with the family, review test results, and discuss options. We're praying that the damage done so far is not so bad that it cannot be reversed, that there is still a way to help Taylor, that she will accepted as a candidate for surgery if that is what is necessary.

Wednesday 05/27

We're still hopeful that Taylor will pull through this - we all know what spunk she has! A couple of promising things happened today. For one, they were able to use a different medicine to control her seizures long enough to do a more in-depth test (something more advanced than an MRI - I don't know how to spell it - but it has something to do with injecting dye into her system and watching where it goes). This is really good news. They were not sure that it could be done at all. The hospital did make the extra effort of moving the machine from the main hospital to the children's hospital, in order to get the test done in minimal time.

The doctors also have come up with a new idea - a new and different medicine to try - that might help get the seizures under control. We are hoping and praying...

Tuesday 05/26

Okay. So lastnight, I vented a little. I'm told that this is normal. This is ironic. Nothing feels "normal" anymore. I do believe now that the people at Vandy are doing all that they can - but there's just some things out of their control.

I haven't written today because I have not had the words. Basically, the family has had two meetings with the doctors... one this morning and one to review Taylor's latest catscan. The doctors have told us that they have just about exhausted all of the options... and even gone outside the box... searching for something to stop the seizures. Nothing is really working. Even the medicine that does work can only be continued for a limited time and then impacts her organs.

We are still hopeful and praying for a miracle. The doctors are still holding out some hope - but are also preparing us for the worst scenarios. The catscan confirmed that the swelling in her brain is global. And yet they will try again tomorrow to do the dye test that may tell us specifically which areas of the brain are functioning and if she may still be a candidate for surgery. There's some other bad stuff that I just don't want to talk about. Just know that we need - that we are all begging - for a miracle.

Monday 05/25 - later - IS Vandy the right hospital?!

I guess I spoke too soon..? The new team of neurologists this week have a much more pessimistic view of Taylor's situation.

I am starting to question whether Vanderbilt really is the best place for Taylor..? I don't understand how they can change doctors every week and hope for success. And it seems like last week's team did not even consult with this week's team? They seem to be on two entirely different pages, when it comes to Taylor's situation. It would seem to me that in a case like this, some continuity would be crucial. Do the new doctors even know her history?!

I'm told that switching teams every week is typical of a research hospital. So, maybe a research hospital is not where Taylor needs to be?

And why, when they put her back on anti-convulsants, did she start getting more burst activity on her EEG brain patterns? And why, when Jennifer asked, did the doctor just dismiss it as a coincidence? Why did they not at least listen and try to take her back of the meds in order to make sure?!

There is another meeting with the doctors tomorrow at 10am.

Monday 05/25

There's been little change over the weekend. The new gas medicine continues to help, however, they may have to take her off of it soon due to complications that can arise from using it for a prolonged amount of time.

There was one major incident, though. Friday night the machine that administers the medicine stopped working properly and Taylor was not getting the medicine. She started seizing again. It took an hour or so to get her brain waves back to a restful state. I just can't understand how this happened with a nurse standing there 24/7 monitoring Taylor. It's very upsetting.

We received sad news about another child - a 16 year old girl named Cyan. She was in the hospital for her second heart transplant. She's been fighting for her life, for a very long while now. We are all very heartbroken to hear of Cyan's passing. Her mother, Rebecca, is a remarkable woman. Our hearts go out to her and her family.

I know that Taylor and all of the children at Vanderbilt are at one of the very top hospitals and the doctors are doing the best that they can. They all need our prayers.

Friday 05/22

Taylor's about the same... some good and some bad. The pancreas is a little better but the pneumonia is a little worse. They will need to drain the fluid from her lungs. The Versad medicine did not work yesterday - it could not stop her brain from "bursts" of activity. So... yesterday they put her on a new machine and a new medicine that is administred through gas. The medicine is working better at controlling her brain activity... she has pages of flat lines... which is good... but then pages of burts which is not good. But, that's more success than they've seen with any other medicine. The phenabarbitrol is still wearing off.

What is most frustrating and scary is that the doctors still really don't know what is causing this or how to fix it. This morning 9-10 doctors met with the family. All tests for every virus or other cause they can think of have come back negative so far. Some tests won't come back for a month, though. And even if they figure out the cause it may not help them help her to get better. They called Taylor's present condition "intractable status seizures"... that basically means seizures that won't stop. There is still inflamation of the brain. But the doctors cannot isolate exactly where these misfires are occurring. They will do a new type of test -- like an MRI or PET scan - but better. They will inject a dye and see where it goes, study what happens. Hopefully, this will tell them more. The bad part about this new test, though, is that they will have to move her to the main hospital - and any movement - however slight - makes her brain activity go haywire.

Lastnight family friends brought home-cooked meals for our family and to share with other families here in the Ronald McDonald's House waiting room, as others have done. We've met some amazing people here - with both heartbreaking and inspirational stories.

Wednesday 05/20 - late night

How's Taylor doing, you ask? Well... that depends on who you ask.
Literally.
Even the experts don't agree/cannot figure it out, it seems.
I think it's making us all a little crazy. Crazy with heartbreak. Anger. Frustration. Worry. Sadness.

They have to take her off of the phenobarbital and some of the other anti-convulsants because it was causing "high toxicity" in her blood. Apparently, her pancreas is inflammed and there is continued worry over the health of her other organs. So, while they've stopped the phenobarbital, they've started her on another med called "Versad" or something like that? It's something like valium, maybe? The goal is to get her brain waves to go flat... but so far it's not working... they are better than before but not flat. But she is hanging in there and we are still optimistic that someone will figure out the answer soon.

Wednesday 05/20

Yesterday the news was so upsetting that I could not bring myself to post. Jennifer did though - she wrote a letter to Taylor in the Guestbook.

Julie and I returned to Nashville late lastnight, to be with Taylor. Things were not looking well yesterday at all... Taylor's brain was swelling and they had decided that no matter what they have to bring her out of the medically-induced coma, even if it meant the seizures return.

During the night, though, things improved! Her swelling has gone down and although she is slowly being weaned from the phenobarbital her brain patterns lastnight looked healthy.

Unfortunately, now the brain patterns are spiking a little and are a concern again. In addition, she started running a low grade fever and is not tolerating her feeding via the feeding tube. The doctors worry that this may be the result of an issue with her pancreas (as a side effect of the medicine). They will run blood tests today. Nevertheless, the doctors are now a lot more optimistic this morning than they were yesterday.

For now, it's still a wait and see, as we wait for the penabarbitrol to wear off.

Monday 05/18

The neurology team and the CCU doc just talked with Jennifer again. We are in a serious situation now. The meds are beginning to affect Taylor's renal functions....which means her kidneys and her liver could be affected. Her creatin level is high - so that indicates some liver issues. They have decided to maximize the anti-convulsion meds over the next 48 hrs and then they will be forced to take her out of the coma. If she keeps seizing, they will try a few other options before considering surgery on the brain, to go in and remove the infected area. Rehabilitation is inevitable at this point and each day she remains here the list of needs she will have continues to grow.

Sunday 05/17

Taylor's temperature seems to be holding steady and normal today. The doctors are going to try a different barbituate, instead of the phenobarbital used to induce or maintain medically-induced comas. I assume this is to see if a different drug will help her maintain more consistent brain waves..?

Though I had to return home and to work on Friday... Jennifer, Matthew, Mom, Dad, and Beth, together with the support of their friends, co-workers, and loved-ones (Dan, CJ, and Aaron), make sure that Taylor is never left without a family member nearby. I am sure that Taylor can sense that they are there and is comforted by their presence.

Saturday 05/16

No real change today. Taylor does seem to run a slight temperature from time-to-time. I'm not sure if that's because of the coma or if she's still fighting something off.

Friday 05/15

In the meeting today, the doctors gave many reasons to be optimistic... but also warned that this will be a long, long road.

There's been no real changes today - but at least she is not getting worse. They've decided that it will now be mid-week or so, before they try to wake her up again. And they will have to get her off of the ventilator before they can do another MRI.

They've encouraged Jennifer, Matthew, and other family members to try and return to work - at least part-time.