baby born with no face

[blueclouds]

You know, AUSSIE, I have spoke to 2 women who have had ABORTIONS BASED ON A POTENTIAL DIAGNOSIS OF TRISOMY 18, which is what my daughter was "supposed to have" and DIDN'T. IT breaks their hearts and mine that they made a decision based on ultrasounds. Trisomy 18 babies don't survive so they thought they were doing a compassionate thing by letting them go early.

It infuriates me to think that maybe those children were NOT TRISOMY18 at all but some other defects. My daughter has had delayed walking, talking, motor skills - you name it. BUT YET, SHE'S IN GRADE 2 AT AGE 7, ABOVE AVERAGE IN HER CLASS, 84% average, SPEAKS 2 LANGUAGES. TEACHER SAYS SHE SPEAKS BETTER UKRAINIAN THAN ENGLISH. She takes skating lessons, swimming lessons and loves every bit of her life. There is the "odd" time that a child will tease her for being slightly different and we work through those times often explaining that they don't mean to be MEAN, but don't know any different.

She's beautiful, kind and very very thoughtful of others. TO think of this child born without a face, not having a chance to live her life, THAT BREAKS MY HEART. She will show the world her potential. God or whatever you believe in, has already given her the strength to shrug off other's opinions of her.

 

[AuntieKaren]

"No face" is really not accurate. She has a face, it's just disfigured. For some reason, that's been bothering me and I had to comment.
Thanks--
Karen

 

[blueclouds]

I think that possibly, the poster placed those words because of the headline? I don't think it was hurtful or intentional. I often use the headline as well, to post stories.


EDITED: HERES A LINK TO THE OFFICIAL SYNDROME SITE INCLUDING PHOTOS OF A BEAUTIFUL GIRL WITH HER "NORMAL" BOYFRIEND.

http://www.treachercollins.org/main.html


NOTE: THE FIRST PAGE OF THE WEBSITE STATES:
What matters most is how you see yourself.
That should say it all and end this debate on "quality" of life for this child.

 

[aussieblue]

"No face" is really not accurate. She has a face, it's just disfigured. For some reason, that's been bothering me and I had to comment.
Thanks--
Karen

Yeah i mentioned that in one of my posts auntiekaren
She has a face, its just distorted thats all.

 

[aussieblue]

blueclouds]You know, AUSSIE, I have spoke to 2 women who have had ABORTIONS BASED ON A POTENTIAL DIAGNOSIS OF TRISOMY 18, which is what my daughter was "supposed to have" and DIDN'T. IT breaks their hearts and mine that they made a decision based on ultrasounds. Trisomy 18 babies don't survive so they thought they were doing a compassionate thing by letting them go early.It infuriates me to think that maybe those children were NOT TRISOMY18 at all but some other defects.

You know I had 3 ultrasounds during my pregnancy and NONE picked up my daughters deformities.
I'm glad because i dont think i could have handled that.
You see when i was 8 months pregnant it was confirmed that our son (hes the oldest) was intellectually delayed ( i believe you call it mentally challenged??)

It infuriates me to think that maybe those children were NOT TRISOMY18 at all but some other defects.

It happens all the time, sadly.

My daughter has had delayed walking, talking, motor skills - you name it. BUT YET, SHE'S IN GRADE 2 AT AGE 7, ABOVE AVERAGE IN HER CLASS, 84% average, SPEAKS 2 LANGUAGES. TEACHER SAYS SHE SPEAKS BETTER UKRAINIAN THAN ENGLISH. She takes skating lessons, swimming lessons and loves every bit of her life. There is the "odd" time that a child will tease her for being slightly different and we work through those times often explaining that they don't mean to be MEAN, but don't know any different.

Its amazing what the kids can do when they have support, love, understanding and guidance. Your daughter is thriving because she has all that from her family. Sounds like she has a good school too (that is very important)

She's beautiful, kind and very very thoughtful of others.

Its funny how most kids who have an impairment/disability etc are very thoughtful and caring towards others. I think its because (if they are old enough) they understand how teasing hurts ones feelings. They have a very real understanding of it.

TO think of this child born without a face, not having a chance to live her life, THAT BREAKS MY HEART. She will show the world her potential. God or whatever you believe in, has already given her the strength to shrug off other's opinions of her.

It still totally amazes me on how strong willed these kids can be and how quickly they recover from their ops.
They recover quicker than the parents lol.

 

[aussieblue]

EDITED: HERES A LINK TO THE OFFICIAL SYNDROME SITE INCLUDING PHOTOS OF A BEAUTIFUL GIRL WITH HER "NORMAL" BOYFRIEND.

http://www.treachercollins.org/main.html

EXCELLENT site


NOTE: THE FIRST PAGE OF THE WEBSITE STATES:

What matters most is how you see yourself.

You'll find that saying everywhere and anywhere that has to do with cranio-deformities. I think its our motto lol and its a good 1 too.

 

[AuntieKaren]

I think that possibly, the poster placed those words because of the headline? I don't think it was hurtful or intentional. I often use the headline as well, to post stories.
QUOTE]

I never said I thought it was hurtful or offensive...?? Just inaccurate, that's all.
Karen

 

[2sisters]

I just took the title of the thread from the headline, sorry to offend.

 

[lcookster]

This link has really touched my heart. My prayers and admiration for the families who have worked so hard to give their kids the best life possible. My husband and I contribute to a charity called The Smile Train. Anyone ever heared of it? www.smiletrain.org Sorry I can't post the link, I am not fabulous on the computer. For $250 dollars you can help change a child's life somewhere in the world. It is an interesting and worldwide approach. L

 

[lisag]

I feel so bad for this child - life is cruel enough without added problems or difficulties.
But, all that really matters is that she loves and is loved.
I would in no way be "torn" if this were my child. I would love her, help her and guide her, no matter what. We would go through everything TOGETHER.

 

[Jeana (DP)]

AussieBlue, to answer your question about whether I'd be torn if it were my own child . . . I don't know. I don't think its something I can speculate on either. I think God knows that I don't have what it takes to be the parent of a special needs child. After reading this thread, seeing television shows about families such as the one in this thread and your own, I'm humbled beyond belief. Thanks for posting on this thread and sharing your story with us and all of the valuable information that you posted!!

 

[aussieblue]

I just took the title of the thread from the headline, sorry to offend.

2sisters, I dont think anyone was offended by you (well i know i wasnt)
You just copied the title of the article. No prob there

BTW Thanks for posting the article (others probably wont thank you though because they had to put up with my posts lol)

~aussieblue~

 

[Jacobi]

2sisters, I dont think anyone was offended by you (well i know i wasnt)
You just copied the title of the article. No prob there

BTW Thanks for posting the article (others probably wont thank you though because they had to put up with my posts lol)

~aussieblue~

I think we're all very glad you posted. It has really made me think and I hope, through people like you and Juliana's parents, society's perceptions will change and grow to be more accepting and tolerant.

Best wishes to your family for 2005.

 

[SUSANSTARR]

Jacobi, my daughter just read your first sentence and believe me i can not post the reply that she wants me to post to you.

LWOP, well if that is the case its because of societies judgmental attitude, people just dont see past the disfigurement.

End Tragically?????
She is a child who is well loved, wanted and cherished by her parents, thats a lot more than other kids receive (just read this board about all the child abuse and murders)
Yeah ok she has deformities but she also has a heart a soul a personality. She will laugh, she will cry, she will love, and she will cuddle because SHE IS A LITTLE CHILD, SHE IS HUMAN and luckily she was given to people who are capable of seeing past the impairments and loving her for who she is not how she looks.

We forget about deformities that don't show on the outside! A lot of people don't even know they have them.No compasion, and not being able to behold beauty unless it is SKIN DEEP! I think they deserve pity more than any child, because in most cases they can't be made better! It makes me so angery that any child has to be defended for being alive!!!!

Susie from Texas