Baby Frozen in time

Discussion in 'Up to the Minute' started by lisag, Oct 25, 2005.

  1. lisag

    lisag Former Member

    Messages:
    4,218
    Likes Received:
    0
    Trophy Points:
    0
  2. Loading...


  3. SewingDeb

    SewingDeb "Sorry, I'm not qualified to land the plane."

    Messages:
    8,957
    Likes Received:
    1
    Trophy Points:
    0
    This is so unusual! I noticed geneticist couldn't find anything wrong with her chromosones and growth hormones have been tried.
     
  4. SpongeBathHotPants

    SpongeBathHotPants Verified insider - Kenneth Coakley case

    Messages:
    667
    Likes Received:
    0
    Trophy Points:
    16
    Wow, I am blown away. And good for her parents. I wish some of these bad parents who kill their kids would be more like Brooke's parents.
     
  5. amandab

    amandab Well-Known Member

    Messages:
    2,827
    Likes Received:
    43
    Trophy Points:
    48
    Is there a written article on this? I can't view the video here at work.....
     
  6. lisag

    lisag Former Member

    Messages:
    4,218
    Likes Received:
    0
    Trophy Points:
    0
  7. blueclouds

    blueclouds Former member

    Messages:
    3,521
    Likes Received:
    1
    Trophy Points:
    0
    It maybe a form of Trisomy 18. My daughter was misdiagnosed at birth as having Trisomy 18. It's where babies won't grow physically or mentally. Girls have lived upto their teens, albeit very few, and boys are usually stillborn or die at birth. So sad. :(

    BUT it might be a "non traceable form" as Trisomy 18 does have a genetic test.
     
  8. nanandjim

    nanandjim Former Member

    Messages:
    16,107
    Likes Received:
    0
    Trophy Points:
    0
    It is really perplexing that Brooke has grown neither physically or mentally. I could see one or the other but not both. It is also very perplexing that they found no abnormalities in her genes. I wonder if they missed something.

    Her parents and her sisters seem really loving and nice. So, Brooke is very lucky in that sense.
     
  9. nanandjim

    nanandjim Former Member

    Messages:
    16,107
    Likes Received:
    0
    Trophy Points:
    0
    The parents didn't mention if Brooke was tested for this. From what you describe, it sounds possible. However, the parents said no doctors have come forward with any other cases like Brooke's. ???
     
  10. Norma

    Norma Pook

    Messages:
    1,762
    Likes Received:
    0
    Trophy Points:
    0
    My girlfriends daughter has something similar. Now in high school, she barely weighs 40 lbs. She was over 2 before she would wear premie clothing.

    all her muscles were contracted when she was born. It's been a tremendous amount of surgery's cutting the muscles so that she could slowly have her arms and legs extended, and that the tops of her feet could be pulled down from resting on her shins. She walked for a few years, but is now back in a wheelchair. She looks like a little tiny girl, but has brain function is fine for her age bracket and she excels in school.

    They know it's genetic, but it's so rare that most doctor's have never heard of it, let alone seen it.
     
  11. blueclouds

    blueclouds Former member

    Messages:
    3,521
    Likes Received:
    1
    Trophy Points:
    0
    My daughter was born with clenched fists and legs/feet were turned into eachother. Smaller mouth, overlapping fingers, born "smaller" than average children, small fingernails, long face, hearing loss, heart problems - murmurs or actual valve defects and other issues....

    This is what I can recall off hand. After initial tests didn't show HUGE issues with her internal organs, they then considered a "partial trisomy 18" child where she would most likely live quite long but grow a bit and mature slightly. This is what I'm thinking with this child. That she has a partial syndrome of something.... that maybe within the family of trisomy 18.

    After watching the video, I agree with the family. ENOUGH TESTS. My daughter too- has ???SOME SYNDROME, but does not fit within any certain category. She has matured mentally & physically with some delays although academically she's normal.

    The endless testing can become very tiresome, especially when there are no answers. So we live each day no big deal. She goes for her regular eye checks, hearing tests & heart tests.... and otherwise, we've shut down the endless genetics studying...

    I'm glad that family is just deciding to enjoy her for what she is and who she is. They have no answers as to their daughters lifespan BUT KNOW WHAT???? None of us know when we're going to die.

    Hugs to the family.
     
  12. vanillasky

    vanillasky New Member

    Messages:
    1,395
    Likes Received:
    0
    Trophy Points:
    0
  13. angelmom

    angelmom The love stays...forever in our hearts

    Messages:
    7,376
    Likes Received:
    0
    Trophy Points:
    36
    This is really an amazing family. Her parents seem so together and positive.

    I think I have read about a "mosaic" form of Trisomy 18 where only some of the cells have the trisomy and some are normal cells, and the percentage of affected cells varies widely from person to person.
     
  14. BillyGoatGruff

    BillyGoatGruff New Member

    Messages:
    2,173
    Likes Received:
    0
    Trophy Points:
    0
    I've actually seen a child very similar to this girl. It was around 10 years ago. I have a nephew who is mentally handicapped, and one of the kids in his Special Ed playgroup back then was Arthur--who looked like a perfectly normal 2 year-old boy. Except that he was 16. Arthur had the same head deformation as this little girl, same lack of mental growth, as well as the same splaying of the nasal bridge...hmmm. Possibly a very rare genetic condition.
     
  15. BillyGoatGruff

    BillyGoatGruff New Member

    Messages:
    2,173
    Likes Received:
    0
    Trophy Points:
    0
    The family's emotional & mental outlook is no doubt helped by the fact that their child still looks more-or-less like a normal baby. The bonding is very strong on that level. And she's easy to move, control and care for, compared to a normal 12 year old sized child who would have the same developmental problems & health issues.

    I know a family that took care of a pair of ancephalic twins for nearly 8 years. The twins never learned to respond to their names, sit up, crawl, feed themselves etc. All they could so was eat, poop & feel pain. The biological parents (relatives of theese people) had effectively abandoned the twins at birth. The family finally had to have them institutionalized because they lived in a very small house and the twins had effectively outgrown the disposable diapers they could afford to buy and were so heavy/large, it was difficult to move them enough to prevent bed sores from developing, not to mention cleaning them. Their entire lives revolved around feeding, changing & monitoring the twins, and it finally got too much for them. They're in a decent nursing home about 300 miles away, and their great-grandma (who was the one who took them in and their primary care-giver) goes to check on them once a month.
     
  16. angelmom

    angelmom The love stays...forever in our hearts

    Messages:
    7,376
    Likes Received:
    0
    Trophy Points:
    36
    You are right that her size makes her much easier to care for. I empathize with the family with the twins. I have never heard of anencephalic patients living for that long! That must have been a tremendous gift to care for them for so long, and a heartwrenching decision to make. There is a special place in heaven for them.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice