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Cruel life for baby MB

by Medindia Content Team on  March 6, 2006 at 8:15 PM Child Health News   - G J E 4
Cruel life for baby MB
A baby with spinal muscular atrophy battles for life and in the court. The case is whether life support can be withdrawn has an "intolerable life" the High Court has heard.
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A baby called MB, who cannot be named, is suffering from spinal muscular atrophy and cannot breathe unaided. The baby in question is only 17 months old and is battling for life.

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According to doctors, their medical advice, it is in his best interests to withdraw ventilation and to let him die. His family on the other side naturally say that he has a reasonable quality of life and should stay alive.

As any other family together and in distress they feel he can recognise and respond to them, and that he gains enjoyment from spending time with his family. "We are hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn," said Baby MB's mother

According to the doctor in his statement to court said, "I think the cumulative effect of all this is that he has an intolerable life."

Baby MB has also been wearing splints on his hands and feet intermittently, which caused discomfort, and a risk of limb fractures would develop in relation to normal handling. Mr Justice Holman, judge said, "This case concerns a baby who requires constant ventilation and would die rapidly if it was removed."

His incurable condition, SMA - which affects one in 6,400 newborns, is set to lead to almost full paralysis. In the views of his mother : "We want our son to have a tracheotomy so we could take him home and give him a life, instead of being stuck in a hospital. We are hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn."

Dr Andrew Whitelaw, professor of neonatal medicine at Bristol University, said: "In this particular case it may be that there are good periods, good days and that ventilation is justified in order to continue to give this baby a good period. The point is that SMA does not get better - it is not one of these conditions for example brain injury where there is a real possibility of recovery and improvement."

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My youngest daughter also has SMA Type I, and she is one of the happiest individuals I have ever seen. She is intelligent and funny. She has to deal with a lot of medical equipment, but she doesn't seem to mind. Baby MB's parents should have the final say in this decision.
guest Tuesday, March 7, 2006
My daughter has Spinal Muscular Atrophy, and she loves life more than anyone I know. She is a bright almost four year old and goes to preschool. She can speak very well and says when she grows up she wants to be a doctor to check people's hearts. I think these doctor's hearts need to be checked. The only thing cruel in this case is having to go through life with a heart made of stone.
guest Tuesday, March 7, 2006
My daughter is going to be 4 years old in April. She has SMA type 1. She has an older brother (without SMA) and they have a great quality pf life. My daughter used a suction machine, bi-pap machine, cough assist, fed by a g-tube, has chest physio. She is very smart and happy. She can cry, but only does so when she is upset at an activity, wrong t.v. program. If she was in pain, I think she would be crying alot more. She has a preschool program. She does have a great quality of life.
guest Tuesday, March 7, 2006
I am a nurse who has worked with several kids who have Spinal Muscular Atrophy. I currently work with an 18 year old who has been told by doctors all the time that she has no quality of life and that she is in pain and suffering. How does one determine quality of life is my question. MJ is 18, is a senior in high school in the honors program. She has been accepted to the honors/engineering college in Ohio for the fall. She has her own organization, makes/designs websites, talks to families daily, and never gives up. Those doctors need a reality check to see that MB can have a good quality of life if they stop playing God and let the family decide. Ultimately, it is up to the family and the child what they want. MB is telling the docs that he is fine and wants to live, that is why he is still there. My guess, he is upset by what they are doing to him and not letting him go home! Do the right thing!
guest Tuesday, March 7, 2006
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.
guest Monday, March 6, 2006
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.
guest Monday, March 6, 2006
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.
guest Monday, March 6, 2006
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.
guest Monday, March 6, 2006
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.
guest Monday, March 6, 2006

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