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 Guest
My son has the same diagnosis am baby MB. He is 3 years old. He is very intelligent. He uses a computer with only his finger. He is happy and loves life. He has a trach and a feeding toube in his belly. We take care of him at our house with the help of a nurse. We take him out shopping and for walks. SMA does not affect the brain. It is a proven fact. As a matter of fact most of theese kids are highly intelligent. The court has no right to make this decision. It is the parents decision to make and it sickens me that they can't make it.
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Replied on Monday, March 6, 2006 12:00 AM
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Guest
I too am disturbed by this story, I too have a daughter who will be 5 in May with the same condition as MB. My daughter cannot swallow, uses a BiPap Machine to assist her at night. She loves life, is in preschool, travels all over the country, loves to shop and loves LIFE. It is scary and WRONG that doctors feel they can dictate WHO has a quality of life and WHO does not, it is the parents decision. I am very angry over this situation and feel it is WRONG.
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Replied on Monday, March 6, 2006 12:00 AM
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Guest
My granddaughter has the same condition that this baby has. We were told that she would die before she was 2. Well she will be 4 in July and is a very happy little girl. She uses a bipap daily to breath, is feed by a g-tube, wears braces on her feet to prevent contractures, wears a body brace to slow the progression of scolosis, and is placed in a standing frame daily for bone health. Even so she thinks this is normal and loves life. This is not a decision for the courts but one for parents. Please put the decision where it belongs.
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Replied on Monday, March 6, 2006 12:00 AM
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Guest
My 23 month old daughter has the same disease as baby MB. She is the happiest little gal I have ever met with a very good quality of life. She also is very bright. Just because the Dr.s cannot communicate with baby MB does not mean he cannot communicate. Maybe they don't know how to communicate with him. Baby MB's quality of life needs to be determined by his family. They are the only ones who can truley know what his quality of life is and can be. Doctors don't always know best.
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Replied on Monday, March 6, 2006 12:00 AM
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Guest
I am extremely disturbed that baby MB's parents are being placed beneath the doctors in decision making for their child. My son, Logan, has SMA, is 20 months old, and is tracheostomized, on a ventilator, and is fed via G-Tube. He is still a happy little boy, who loves stories, Sesame Street, Teletubbies, games, and a plethora of other daily activities. If someone tried to make a decision like that for me, I would seriously have to consider the ethics involved with the society around me. I am disgusted with this whole controversy; the parents are the bottom line.
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Replied on Monday, March 6, 2006 12:00 AM
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