baby born with no face

Discussion in 'Bizarre and Off-Beat News' started by 2sisters, Dec 13, 2004.

  1. 2sisters

    2sisters New Member

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    I felt so bad for this family, it must be so hard to deal with the stares and the endless hospital stays. If anyone is interested in helping there is contact info at the end of the article.

    JACKSONVILLE, FL -- When most parents have a baby, they spend months dreaming about what their bundle of joy will look like. Will she look like mom? Will he have dad's eyes? But for one local Navy family, the birth of their daughter didn't give them the answers to those questions. Their daughter was born without a face.

    When Tammy was pregnant, she knew something was wrong. At worst, they thought maybe their baby had a cleft lip...

    http://www.firstcoastnews.com/news/local/news-article.aspx?storyid=28372
     
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  3. blueclouds

    blueclouds Former member

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    "But no matter what, these new parents had a wish. "That if there was something wrong, she wouldn't be alone. We wanted to make sure she felt loved," said Tom, as he began to cry. "She squeezed my hand."

    Little Juliana is missing 30 - 40 percent of the bones in her face.

    "She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear," explains Tom."


    What beautiful parents that are going to love her no matter what. Everyone has a place in the world. EVERYONE. We all have defects if we look in the mirror close enough! My heart goes to them. I'm sure their daughter will have a very loving life.
     
  4. Jeana (DP)

    Jeana (DP) Former Member

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    I'm torn right in half going back and forth with my feelings on this. With medicine being able to save people who would have died years ago comes alot of tough questions. What about quality of life? What's going to happen to her when her parents aren't here to care for her? I'm torn.
     
  5. 2sisters

    2sisters New Member

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    I got the impression when they were talking about surgeries that the surgeries would continue until her face was reconstucted but I wonder if that is possible. I hope the doctors can somewhat reconstruct a face for her because before the parents know it she will be in school and I hate to think of how other children might treat her. I know that God gave her to the right parents b/c they seen like wonderful people.
     
  6. Jacobi

    Jacobi New Member

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    That child has been sentenced to LWOP. I sincerely hope modern medicine is able to reconstruct her face because I doubt that modern psychiatry is up to the task. It's a sad situation and I fear it will end tragically one way or another, despite the parents' love and commitment.
     
  7. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    I am going to comment on each of these posts individually ....

    Your right 2sisters it is hard to deal with the stares but it is even harder dealing with INSENSITIVE people who make CRUEL comments and judgments. The hospital stays, well after awhile (years and years) the hospital just becomes your 2nd home, the doctors and staff become family. She has many years of reconstruction ahead of her.

    BTW I’m trying to contact them and i have talked to my daughters Cranio-Facial Surgeons/fellowship and they are also going to try to contact this family.
     
  8. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    Blueclouds, through my tears and from my heart i THANK YOU my daughter THANKS YOU my husband and son THANK YOU, the kids, adults and staff at the Australian Cranio-Maxillo Facial Unit THANK YOU. If only there were more caring people in this world LIKE YOU but sadly most will judge kids/people like Juliana (in the story) and my daughter as "inferior humans" who will lead sub-standard lives because of their disfigurements.
    These bigoted people and their judgements cause more pain and damage to the inflicted person than the disfigurement/s itself.
    All these people see is the disfigurement, they dont see the love, the strength, the courage and the joy.
    These peoples judgements break my heart because my daughter is BEAUTIFUL where it truly counts, the heart!

    You make the world a better place blueclouds,
    we THANK YOU
     
  9. WasBlind

    WasBlind Former Member

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    I found some wonderful supports groups for families with children born with Treacher Collins Syndrome, on-line, if anyone needs more information.

    Prayers for Juliana, and her loving parents!
    With love and HOPE, Lanie
     
  10. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    Would you be torn if it was your own child????????
    Would they be tough questions (medical advances) if it was your child being saved.
    Quality of live! It depends on your definition of quality.
    Her (Juliana)biggest battle in life will be societies (ignorant) attitude that she is sub-standard.

    What makes you think that she will need full-time care all her life??????
    There are those who are blind, deaf, Quadriplegic, intellectually impaired etc and worse, are you torn over these people as well, what about their quality of life and the medical advances that help them???????? What about prem babies?????

    Well you might be torn BUT i am not, I thank medical advancements for my daughters life and for her reconstructions. My daughter is a loving, caring, functioning, strong individual who has a above average IQ (like alot of people who are born with cranio disfigurements, yes thats right alot have above average intelligence).

    from the article....
    It's a life-long process that's draining for Tammy and Tom. Even still, they're thankful and full of love for their sweet child.
    "God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom.

    It doesnt seem like her parents are torn either, they LOVE their daughter disfigurements and all. Just as i love mine!!!!!!!!!!
     
  11. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    Yes it is possible (cranio-reconstruction). It will take years though, probably up to the age of 21 (maybe more). It has to be done in stages as she grows and matures, it cant be rushed.

    For eg: my daughters 1st operation was at 7 days old (she was the 1st in the world to have it at that age, so the guinea pig so to speak). My daughter had her last reconstructive operation last year (aged 19). She only now needs some plastic touch ups for the scaring ( very faint scars) and a couple of more years of ortho work. She's had over the years 14 major reco's and about 11 minor ops ( well minor for us). My daughter is in no way as severely disfigured as Juliana. My daughter was born with a severe complete unilateral cleft lip and palate. Similar to the following links, except she had a more severely disfigured facial structure, her nose (no bridge so no structure/height to her nose) she only had a small section of top jaw (about half the normal size) her bottom jaw protruded (to large) and she also had inverted cheek bones. No palate (roof of your mouth). All these lead to other problems such as facial symmetry, speech, Orthodontics, ear problems/hearing, disease and eyes/symmetry, vision.
    If you’re interested check out the links i'll post and you can see for yourself what modern day medicine can do, its totally amazing. Some of the people in these links i/we personally know (doctors, patience etc).

    BTW they use bone grafts to reconstruct jaws etc.
    They took bone from my daughters hips and ankle for jaws and believe it or not, putty to help shape cheeks/chins, lots of screws and plates hold things together. Its totally amazing what they can do.
     
  12. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    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.
     
  13. Jacobi

    Jacobi New Member

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    Unless her disfigurement, and speech and hearing problems, are addressed, she will limited within the confines of an unfair and ignorant society. No amount of love and affection will completely address those problems. Yes, the child is lucky to be born into a family that is so obviously caring and loving, but she is unlucky to be born into a society that isn't as accepting as her parents are. In the video, when the mother talks of the girl who labeled the child as "disgusting", you could really see the hurt in the mother's face. It reminded me of the case of John Merrick, who "felt so deeply marked by the eyes of others that...[he] wanted his next move to be to an asylum for the blind". That is what I meant by my sentence. Please don't misconstrue my comments and think that I, in any way, regard this child as second-class. I have great sympathy for the family and I commend them for being as loving and accepting as they are.

    Yes, the love and the support of the child's parents are paramount to see them through all of this. But, as you say, society is such that people judge on appearance; people can't see beyond the disfigurement. I don't know to what extent modern medicine can help to reconstruct Juliana's face, but it will undoubtedly be a long and arduous process. To make matters worse, she may develop learning and speech difficulties due to her lack of vocalisation ability and hearing problems. My fear is that if the familial support system collapses, for whatever reason, backup systems may not be in-place to take over. That is how I fear it may end tragically.

    Personally, I have worked in the area of disabilities for many years, mainly in the areas of visual and speech impairment. I have worked with many people with disabilities and I know that if the love and support system is not in place, it can be a very lonely world, especially in a society that is not as understanding and compassionate as it should be.

    Regarding my original post, I apologise. My comments were ill-judged and the wording, insensitive.

    Here is a clearer photo of Juliana:
    [​IMG]
     
  14. GlitterySourSkittles

    GlitterySourSkittles Sarcastic and Sweet Southpaw

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    I clicked on the news article link up above and watched the video they had of the family and little Juliana. Even later, after I had shut off the computer and went to bed, I continued to think about her. I even got a bit teary-eyed thinking about it. But it wasn't sad tears, it was joyful tears. She just . . . she made me smile. She just seems like SUCH a happy go lucky little girl and I just had the biggest grin on my face, watching her play her little toy piano and giving everyone hugs. She was definitely blessed with the right family. Things WILL be hard for her, but with the family she's got, she's certainly on the right path.

    aussieblue -- Thanks for sharing tidbits about your daughter's story. I'm so glad that her surgeries have been so succesful and she's doing so well. YOu're right. It's just amazing what modern medicine and technology can do these days. Stuff you'd never think possible..... (sounds like your daughter's got a good family in her corner as well)
     
  15. sassy_texasbelle2

    sassy_texasbelle2 Well butter my butt and call me a biscuit

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    This story once again says what I have always thought...It is not the "shell" it is the heart and soul of a person...Most of us have an advantage we can turn our shell into what we want it to be with the right cosmetics or being able to afford the nicer things...This beautiful child has a huge heart as well as a loving soul...Maybe one day we can stop juding someone by looks or color and learn about the beauty inside...God Bless her and her family.
     
  16. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    As i've stated in previous posts my daughter was born with cranio-facial deformities. So weve lived this (ops, hospitals, stress, bigots etc) for nearly 20 years.

    For those who dont know ....
    The face of the infant begins to develop at approximately seven to nine weeks after conception. The lip develops, about the seventh week and the roof of the mouth, which is the hard and soft palate, at approximately nine weeks of life.

    So these facial deformities happen very early on and are not always dectable during the pregnancy.

    Not always a hereditary factor (wasnt for me)
    Research has also demonstrated that the non-hereditary factors including nutritional deficiencies, infection and various drugs may also cause similar defects.
    Deficiencies for me but not nutritonal.

    Cranio deformities or sydromes DOES NOT always mean intellectual impairment ( think you guys call it mental retardation). Most times though hearing problems.

    My husband and I and our families are born and breed country Victorians (state of australia). Our kids where born there But when our daughter was born with her probs we moved to South Australia (state) because that is where the world renown Mr David (Cranio-Facial Surgeon) is. Yes world renown, even you guys (Americans) study here with Mr David and Mr David also has clinics there (USA). Ive met many American cranio-specialist/surgeons here over the years and also American children coming here for thier ops.
    So the Australian Craniofacial Unit is our 2nd home, the patients we get to know well as these reconstructions take years and Mr David and his team only do operations twice a year, in April and in September usually. The patients are not only Australians but also from (mostly) Asian/pacific countries. Patients from 3rd world countries are sponsored by the australian public and corporations etc, to come here for their reco ops(all costs paid for travel, hospital stay, op etc)
    The Australian Craniofacial Unit is not government funded.

    Seeing children with facial disfigurements has become just a part of life for us.
    Children like Juliana we see often and we see them laugh,cry,smile,complain and we see them love.We see their parents stress out just like we do BUT we also see them love their kids.

    That "born without a face" reference sickens me because she does have a face its just distorted thats all.

    To see some photos on what can be done I'll put some links...

    This link shows the nylon (skull) model. Its a replica of the patients skull and they use this to plan out how to do the reconstruction (piece by piece).
    If you scroll down the page you will see how easy it is for them to replace the missing skull pieces for Juliana by using "titanium cranioplasty".
    The photos on this page are of the NYLON skull model so nothing gory
    http://www.acmff.org.au/information/funding.html


    Some before and afters of Clefts. This website is very informative and easy to understand. Dr. Surajit Bhattacharya is an Indian Dr who has trained here in Australia (He also trained in the USA). He is a lovely guy and he was part of the surgical team for 1 of my daughters ops. He was excellent with the kids.
    http://www.lucknowplasticsurgery.com/cleftlip.htm

    some more before and afters of patients.
    http://www.acmff.org.au/patients/index.html

    There is alot that they can do for Juliana, it will take time though. It is hard to go through (more so for the parents, the kids just bounce back so quickly after ops its unbelievable)
    Our kids deserve acceptance in this world because they deserve it.
    Theyre a hell of a lot tougher than most adults i know and alot more caring and tolerant too.
     
  17. WasBlind

    WasBlind Former Member

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    aussieblue, I sent you a PM (private message)

    Click here at the upper right hand corner of your screen, to read it.

    God bless you, and your precious family. ((aussieblue))

    Thank you for sharing with us. An extra kiss and hug for your daughter, from the Texas gal in Germany.

    With love and HOPE, Lanie
     
  18. Timex

    Timex Retired WS Staff

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    aussie..you have said exactly what I have been thinking since I saw this article.
     
  19. blueclouds

    blueclouds Former member

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    Thank you for the kind words Aussie. We just try to raise our children with the belief that everyone has a place. Every religion has a reason and everybody, gay, straight, 3 eyes, 7 legs - we embrace them all.

    When my second child was born, we were first told she had Trisomy 18 and wouldn't live. Then we've gone through multitudes of "syndromes" including Freeman Sheldon Syndrome that you, aussie, might be familiar with.

    While we don't know what she has or doesn't, we don't care. It's 100000% BETTER than the original diagnosis. She's very healthy and smart. She's above average with academics. We love her no matter her challenges. She's the most beautiful girl to us.

    Again, let's all look in the mirrors. What "defects" do we see? If we cannot look at a child with a facial deformity without pity, we need to look at ourselves again.

    Just like my best friend who happens to be quadrapeligic as well. She doesn't want anyone's pity, ever. She wants to live as normal as possible. And when you spend more than 13 years with her, you don't even see her chair anymore.

    I pray that this child will have friends that will see her inside beauty.
     
  20. fivekidz4me

    fivekidz4me New Member

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    This girl is loved by her parents...that says it all. Perfectly formed, healthy babies are tossed into the garbage bins, or abused, mistreated--or, like Connor-killed. This story warms my heart, and I'll send some prayers to their family. They are in it for the long haul, because they know what LOVE truly is. This child will teach others who know her what life is really about. Aussieblue, bless you for informing people...one day a niece, nephew, grandchild or other relative may need to know there is hope and their baby can be helped.
     
  21. aussieblue

    aussieblue aussie aussie aussie oi oi oi

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    Your right No amout of love and affection will address those problems and that is why Children with cranio deformities have intensive Speech therapy from a very young age. If they have a cleft palate (which most do) they will start as soon as it is repaired.
    My daughter had her palate repaired at 9 months (again a world 1st) I believe in the USA they repair around 1 year of age. She started her speech therapy 3 months later (once a week) and then 3 years of age twice a week. She has had speech therapy ever since (except between the ages of 9-12)because as they reconstruct of course things get moved. Speech therapy just becomes a way of life.

    from article...
    SPEECH AND YOUR CLEFT PALATE CHILD
    There is general agreement that the major potential handicap for a child with cleft palate is a "speech defect." Defective speech was a common accompaniment in cleft palate children in the past.
    There are three major physical problems, which may lead to defective speech for children with cleft palate. These are:
    (1) Inadequate Palatal Function
    (2) Dental Problems
    (3) Hearing Loss.

    So you work with speech impaired, Ok then you should read this article it explains it all. It could also be benificial as many speech problems can be cause by defective soft palates and dental probs.
    http://www.lucknowplasticsurgery.com/cleftlip.htm

    Another true statement BUT it also means YOU also are as unlucky to be born into this society. Sadly the parents will suffer many hurts,many tears, yes society is cruel. What is the saddest thing of all though is that society knows its cruel and yet it just shrugs it shoulders and keeps on going the same way
    INTOLERANT
    What do people/society expect us parents to do when our children are born this way???? Weve given birth, its our baby, you dont throw babies away.
    Give them up?????? Lock them away???? Hide them so society doesnt feel uneasy??????

    I know i'm sounding hard here BUT we (the cranio crowd) have to learn to deal with the hurt. Easier said than done BUT for our kids sake we have to find a way. You dont run and hide because you know theres a******** out there in the world. You learn to stay clear of them, you learn to ignore them (lol i'm still learning that one). The last thing we parents want is for the a******* to deprive our kids of living life. We find the strength and we teach our kids how to find it too.

    Jacobi the most important point here is, she is their daughter, their flesh and blood, they love her. They are committed to her and her well being.
    The parents will toughen and their little girl will sadly find out how cruel people are but she will toughen as well She will also learn how loving and tolerant her parents are and hopefully others in society as well.

    No matter what country you come from the basic procedures for cranio reconstruction are the same. You do not have 1 doctor/specialist you have MANY.
    Surgeons,Orthodontist, Speech Pathologists,ENT,Audiologists COUNSELORS,Therapists etc etc. The group of specialists are called a FELLOWSHIP and everyone in this group plan the stages of the reco.
    This family will be well supported by the medical people/therapists, they will become 2nd family.

    I can see all you are saying Jacobi but the bottom line is our kids are in this world and we parents love them and we will fight society everytime it judges our kids. Its not all doom and gloom for our kids and yes our kids will not always be accepted in your world. Thats why we make OUR OWN and we support our own.

    BTW the photo you linked to is a good one. Let me say this, they can make jaw, cheeks and eye sockets for her. That will lift her face considerably. Go check out some websites you will be amazed on how much can be done.
     

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