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Would you have a child with CP or end its life?
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Would you have a child with CP or end its life?

Hi there,

I'd like to hear from someone who's a parent of a child with CP. Let me give you some background. My daughter was born at 26 weeks 500gms. She's got problems with her lungs and isn't getting enough oxygen. The doctors have given us a choice either to continue with the treatment which could result in CP or another disability if she survives or to withdraw the treatment. The thing is, if you could prevent your child having CP by ending its life would you? What's it like to be a parent of a child with CP? My girl is underdeveloped for her age. Please advise.

Many thanks,
Lara
7 Comments Post a Comment
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Avatar_f_tn
I am so sorry for what you are going through.  I was 20 weeks the first time I went into labor, and was in and out of the hospital until she was born.

My DD was a preemie, adn we were told that she would be blind, deaf, and severely mentally disabled.  My husband at the time and I disagreed about whether to let her go or not.

He left, and I prayed.

The doctors appeared to be right, until she was about 6 months old.  The doctor walked in and said Hiya, and she repeated it. From that point on she came on in leaps and bounds.

She is an intelligent, talented, musically gifted 15 year old.

It has not always been easy.  She has ulceritive coloitis, and was not fully potty trained until she was 4.  She has trouble with optical migraines at times. She was well behind in growth for years, and has had other issues related to being premature.

And if I had listened to the Doctors, I would have missed out on the greatest joy of my life.  

I know it is a very personal decision, and I am sharing my story just as a reminder that doctors are not gods.  They can be wrong.

Do what is in your heart, and let noone sway you otherwise.


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Avatar_f_tn
Thanks for your response. It's heartening.
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Avatar_f_tn
How is your little baby doing now?  I have a child with cp as a secondary dx.  I would not change any decisions we've had to make.  I would take away her disability in a heartbeat if I could, but I can't/couldn't.  So given the choice of having this child with a disability over ending my preganancy or refusing intervention, I would choose again as we did, to have our daughter.
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Avatar_f_tn
Hi, I know it has been several months since you have posted, but I thought I would put in my 2 cents.  
I have a 21 yr old son with C.P.  He uses a walker to get around.  Even though the growing up years were tough at times, and if you look at what your child's life might be like while they are still tiny, it can be daunting.  Take one day at a time, and enjoy every one of them.  I can't even  imagine my life without my son.
I found this article years ago about life with a handicapped child is like planning a trip to Paris but the plane landing in Wyoming, or something to that extent.  It is just different and special, but hard sometimes to see other families doing "normal" things.  God gives us what we can handle, so be brave and love your child/children no matter what.  Be proactive in your child's life, do the therapies, do whatever is required of you.  In the long run, it will be so rewarding to you.
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Avatar_m_tn
I have a 4 year old boy with cp he was on life support for the first  3 months of his life! He had braces on his legs for the first year and he could not walk talk eat or drink the dr told me he would not get better. and now he is normal so no I would not have ended his life he was 2lb 12oz 13 inches long my little blessing!
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Avatar_m_tn
I'm 46 male with mild cp. What I have discovered is there is the real world & the world of ADA. Your child will have disadvantage when it comes to employment. To assist him/her build a strong self worth. Also there is a section in the ADA regarding productivity. I wish my parents or professors or teachers had informed. My grandfather was great help to me. It is vital that a person who has cp have at least one person who tells them the facts about life. "Life is not fair & if you stop fighting you'll loose"

III. APPLICATION OF ADA LEGAL REQUIREMENTS TO PERFORMANCE AND CONDUCT STANDARDS
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My daughter was full term, 15 days late. She started talking at 30 months, walking when she was 3 years old, and fully potty trained at 9 years. Now, at 27 years old, she is working full time, about to switch jobs to another job site, move to another group home.

We, her father and I, were told when she was about 3 weeks old, that she would probably wouldn't talk, walk, speak, dress herself, feed herself, and the list goes on.  WELL...she does all of that and much more! :)

In no way, would I let my child's doctor withdraw treatment. Maybe find another doctor? For sure pray and love your baby, no matter what.
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