Replies to '07/23 Ask the Doctors'

I was born with neuroblastoma, which left me paralyzed from the waist down. I can't imagine if my parents had opted to amputate both of my legs. Yes, they are useless in the conventional sense, but they are a part of me. I have been parapalegic my whole life, and I agree with Dr. Phil.....kids are very adaptable. If I wanted to do something, I figured out a way, legs in the way or not. If a reason arose medically why Jaya's parents considered removing his legs, then that would be different (ie some sort of infection or something). But I really hope they choose, at least for now, to let Jaya learn how to adapt with what God has given him. I have also been the target of many an insult from insensitive children, but unfortunately Jaya is probably going to have to endure that whether he has a prostheses or not. A disabled child learns great human patience and compassion due to the hardships they go through, and those are great qualities to possess. From the video they showed, it looks to me like Jaya is much like any other child, he gets around and does the things he wants and has learned how to do it with the abilities he has. To kids like him, and myself as a child, that is just how it works. We never learned a different way before that, so to us our limitations are just natural and we learn to do everything in our own way.

 

I have an 18 year old with Spina Bifida and Hydrocephalus. She has had 47 + surgeries and procedures. Many of them orthopedic.

When I saw Jayas legs on the show it reminded me of how my daughters legs looked. However, I would strongly oppose such a surgery. It was never given as an option, nor was it ever thought of by myself.

The two disabilities are greatly different I do realize that. That being said, Jayas legs are part of who he is.

 

I wish there way a way that Jayas mother could meet my daughter Heather. She gives me hope and faith. She gives me courage and strentgh. I love her unconditionally for who she is. She is a very independant person, with a big heart. She is always smiling.

 

I feel that her legs have never been an issue, primarily because we have never made them an issue.  She has had third degree burns on her feet, made worse by her not feeling the pain of it. She has constantly scraped up her legs and feet, from crawling. BUT considering the risk of any surgery, I would not change the scrapes and gouges. They are no different in my eyes then if my youngest fell off a bike and scraped her knee. The only difference is Heather cannot feel the pain.

 

I have been there and seen my daughter on life support, almost dying from septic shock caused by infection post-surgery. This was not even an elective surgery. I have also seen Heather have a grand mal seizure that almost killed her after a surgery. It is scary, to think that your child will not wake up, and more scary to watch the situation unfold. It is so much easier to deal with the legs, then the thought of what could happen. To put a child in that situation, I would not do it. It is NOT worth the risk. In my opinion it is almost considered child abuse. It is elective and in my opinion it is very unnecessary.

 

My daughter has grown into a beautiful young woman.  I do not see disability when I look at my daughter, only ability.

 

My love to Sick Kids in Toronto as well. They have saved Heathers life many times! Thank you just doesn't seem to cut it.............I owe them so much more.

 

Dear Dr.Phil,

 

After watching your show ask the doctors. I was brought to tears concerning Jay and his parents inability to make a decison on whether or not to amputate his legs.

 

I am 50 years old,born with a condition called spina bifad.I too am parapalegic.I have had numerous surgerical procedures throughout my life,and many scars

 

.At age 8 my mother on the advice of a doctor decided to have my legs amputated.At  this age i did not understand the impact that might have played throught the rest of my life.

 

The reasoning for the amputation was my legs were scared,bent and basically useless.My father intervened on this decision.and refused to consent to the surgery.Thank God he did.

 

I today still have my legs.the ones i was born with.They are still in the condition they were when my mother decided to have them removed.They are a part of me.and have been useful to me.

 

People do not understand what they are doing when they make or attempt to make decisions in the best interest of someone who is so called less fortunate

 

I understand the love of a mother and wanting only to do the best and right things for their children.I too am a mother of 2 children.and grandmother of 2 .

 

When a person has something that doesn't work they learn to compensate .That i believe is a gift from God and a natural survival instinct we all as human beings have.

 

Sometimes people want to dismiss or remove something they can't imagine themselves being with.We can not truly,happily,completely replace the things we were given at birth.If jay's legs are not a direct threat to his health why remove them?

why give him a lifetime of possible medically related problems with ulcers and infections?

 

 I know myself  as a mother.I would rather have to tell my son later on in his life.we opted to keep your legs because they are your legs.A part of the son we love,cherish,and are very proud of.Rather then to try to explain to him that we  had your legs removed because we were worried about the social impact,the stares,and comments from rude uncaring people.

 

My advice to jay's parents.let your son be a normal active child.Don't look to him as if he were any different then any of your other children.let him try anything and everything that any other normal child would do.let him find his own limits in life.

Don't burden yourself by looking at him with pity,or restirctions.I promise you if you accept his condition as normal for him,he will also accept his condition as normal.and thrive through his life as a normal productive active adult.

 

Jay's mother mentioned she was concenred that he could not feel anything ,and by this he had a tendency to hurt his legs and feet by dragging them on the ground and causing the skin to wear through.She needs to protect his legs and feet with clothing and shoes.and teach him to do the same as he gets older.That will help eliminate damage.

 

I do not believe that God gives us anything we can't handle.he doesn't punish us with birth defects.I do believe however that God makes everyone different and some of us he gives physical limitations, maybe as a learning tool for others.

 

I am very passionate about this subject.and the idea that people don't really stop and think beyond the social aspect of things I will pray that you stop worrying about removing his legs and focus on enjoying a child that is going to astonish you with acomplishments through his life.

 

Attitude makes a person a cripple.not physical limitations.There is not one person on this planet that can do everything.So who is to say we aren't all disabled to some extent?

 

Because people can't imagine themselves in a situation doesn't mean that situation is a bad thing.

I realize you want to do the best for your child.Truly the best you can do for him is love him be proud of him and accept him just the way he is.

I did not walk until i was 4 years old.and through my life i have used my arms as  the means to support my body.walking with crutches.

 

Thank God for my dad.I was given  the chance i needed.