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-   -   TearJerker, read with caution please seriously (http://birthmark.org/board/showthread.php?t=1286)

songstressdiva1 03-21-2005 01:51 AM

TearJerker, read with caution please seriously
 
Ok heres a long story - I found this website just tonite, I am a huge fan of Clay Aiken and I see on Clayreport where he's donated things for your fundraiser - and I wonder if this is what my daughter had - so heres my story,* 18 years ago I gave birth to my 4th and 5th child, a boy and girl set of twins, my daughter Jodi had a birthmark on her backside cheek, the doctors all said its just a birthmark, it was red and raised off her skin and covered a great deal of her cheek and went far enough up so that you could see it out her diaper a little.* When she was about 3 weeks old she started bleeding from her birthmark, I took her to the doctor immediately, he told me he really had no idea why this was happening to her and decided to do a baenima exray the next morning, imagine not being able to feed a 3 week old child from midnite till the test was done, not fun.* The test didn;t reveal anything so he said just to keep a close eye on her.* A while after that open sore blisters were growing on her birthmark, I took her back to the doctor right away, he again said he didn;t have any idea so we went to a dermotologist who said it was rare but* nothing to worry about.* He gave me Silvadine and some other type of liquid medicine to put on her, while the original sores were healing you could still see through the thin layer of skin and others were still forming, our next visit to the doctor he told me she was doing great, I was a great mom, keep doing what I was doing and he would see us in 2 weeks.* Before that 2 weeks came her birthmark turned completely black, rushed her to the hospital immediately.* They worked on her at our local hospital for about 5 hours and then put her in life flight to go to Atlanta Egelstons childrens hospital, theres another part of the story on how we got lost and they took her to another hospital and so on but thats not really important, anyway she died in the helicopter before she ever made it to the hospital.* I know its been 18 years ago but she never* leaves my mind and I need to know could this have been what she died of?*Her twin brother Jeffrey is a very handsome 18 year old young man. I still need answers - any help would be appreciated - thank you

nickbar 03-21-2005 05:03 AM

Re: TearJerker, read with caution please seriously
 
Words can't describe the sadness I feel for you. I am so very sorry this happened!! I also appaud you for bringing this story to us! You don't know how many people you have helped/saved!!! I can't tell you for sure what you daughter had, but it does sound similar to vasular birthmarks. Did they say she died from injection? blood poisoning?

Your son and you have a special angel watching out for you. Again, thank you for sharing your story!!

Corinne



songstressdiva1 03-21-2005 03:48 PM

Re: TearJerker, read with caution please seriously
 
Thank you for responding, it means a lot. They did an autopsy but never said what she died of. I don;t think this was well known that long ago. But you;ve helped me a lot.

nickbar 03-21-2005 05:06 PM

Re: TearJerker, read with caution please seriously
 
I don't think you know the power of your story! You coming forward might just save lives! I know what happened is rare, but it can happen and your wisdom could just help another parent know what to ask!

I know you'd love answers, but I think it is too hard to think "what if"?

THANK YOU! Sending you hugs!

Corinne

eprmo 03-21-2005 10:58 PM

Re: TearJerker, read with caution please seriously
 
I just read your story, and it is heart breaking,,but sharing it with other's may help you and someone else someday.

You are entitled to all of her medical records..if you need more answers..

Hopefully, you will find peace in your heart, just knowing you did all you could for her.

Elissa

PresidentVBF 03-22-2005 01:34 AM

Re: TearJerker, read with caution please seriously
 
I wish I knew your name so I could put it in here. I have just read your email and am devastated. It sounds very much like your daughter had a hemangioma that became problematic or possible kaposi form of hemangiomaendothelioma....these are hemangioma type lesions that grow and begin to consume the baby's blood and the child gets very, very sick, if untreated. One day they seem fine, and then they don't make it. The mortality rate with hemangiomas is due to either an airway hemangioma, liver hemangiomas or this rare type of condition...also called Kassabach Merritt Syndrome. Eighteen years ago so little was known and even today there is still little known. But, rest assured when God gave me the "charge" to start VBF and to change the medical community regarding this subject, I took it seriously. We have distributed a medical textbook to every medical school in the US, we have established guidelines for referring infants to a specialist, we have promoted physician education so primary care docs like the one your daughter saw 18 years ago would know what these are and who to refer the baby to. The American Academy of Dermatology is on board with early intervention and we are working hard to get the American Academy of Pediatrics on board. I can only tell you that I am so very sorry. I am also a twin. Please feel free to call me directly at 877-8223-4646 (evenings, eastern time) if you need to talk about this. Now everyone knows why I can never stop doing this work. I was at Albany Medical Center this weekend with a friend who has a daughter with an airway hemangioma. She is only 2.5 months old. Her airway was almost completely blocked. The surgeon was able to surgically remove the hemangioma. In the past, it would not have been attempted and she would have possibly had a trach but more likely she would have died and they would have said it was SIDS.

Thank you for sharing your story. Please accept my sincerest condolences.

Linda Shannon
President/Founder
VBF

PresidentVBF 03-22-2005 01:37 AM

Re: TearJerker, read with caution please seriously
 
My phone number is 877-823-4646. I saw there was a typo in the number.

Linda Shannon
VBF President/Founder

songstressdiva1 03-22-2005 01:09 PM

Re: TearJerker, read with caution please seriously
 
I so appreciate you reply and your condolences - it was such a long time ago I just feel better knowing what it probably was and I always felt guilty and now I really don;t. I'm just so glad for ppl like you and your doctor that now children are being treated the way they should be. I remember my dermotolotgist telling me if he took it off she would bleed to death and maybe back then thats all they knew, thank God for medical advances. My name is CarylAnn

dilarossi 04-03-2008 05:52 PM

songstressdiva1,
your message touched my heart... I wish you peace and send big virtual hugs your way...

EJsMommy 04-11-2008 10:19 PM

That is so heartbreaking. Although rare, these things can happen with Hemangiomas and doctors don't validate that possibility when it comes to treating these lesions. I have fought with my daughter's ped to seek treatment, and it amazes me how many doctors still treat Hemangiomas as if they are nothing. It is important that you shared your story with us, because it is eye opening, and exposes the reality of these birthmarks. It breaks my heart to hear that your little angel passed away, and it is very clear that your love for her never went away. It is so special that parents read this, so that more parents and families can fight for treatment and not let the doctors win in categorizing ALL Hemangiomas as "no big deal". Yes, some Hemangiomas are harmless, but the difference needs to be better distinguished. I appreciate your story and your strength in sharing it with all of us. My heart is heavy with sadness for your little girl having passed so early, but she is touching our hearts even 18 years later. Thank you for sharing this.


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