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Old 03-12-2013, 08:45 AM   #11
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My daughter who we are adopting has cystic fibrosis. The life expectancy is much better with recent breakthroughs, but average is still about 38 years. Our situation is different because we adopted her knowing her condition and prognosis. Thankfully, her specific mutations result in a milder than normal disease, so her prognosis is for a full happy life.

We do everything we can medically to ensure her health. She takes 3 hours worth of breathing treatments daily just for maintenance, more if she's sick. She also requires roughly twice the amount of calories as an average child her age, so we have to be very good a out meal planning and offering snacks to help her meet her caloric goals. She needs to take enzymes with all food, so everywhere we go I have to pack food, Pediasure, and enzymes. We do not skip treatments EVER even though her docs say its ok every now and then. We do everything we can medically to ensure her health. If there was a new treatment not covered by her Medicaid, we would find a way to pay for it.

Since we are adopting through the foster system, her in-state college tuition is waived, but we are saving anyway in case she wants to go out of state or to cover books and dorm. I am dreading paying for this little diva's wedding

We are taking her education very seriously and enrolling her in speech therapy. I am keeping her out of the public school PPCD class even though she qualifies for it, because her treatments are so time consuming I don't see how we can fit in naps, meals and snacks, family time and school. I am starting a homeschool program with her, and if that goes well I will continue homeschooling at least until she outgrows the need for a nap. At that time we will reevaluate.

Just wanted to share our thought processes on this. We assume she will lead a full life and plan just as we would for an average child. Even if her prognosis was not as good as it is, I would do the same and allow her to be a normal kid as much as medically possible.

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Old 03-12-2013, 08:58 AM   #12
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Re: WWDY if your child had a life shortening genetic disorder?

I would follow though with all medical treatments DH and I deemed appropriate. Medical breakthroughs occur every day and we would do whatever we judged to be appropriate to prolong his or her life hoping that that next medical breakthrough for him or her was right around the corner.

I would plan for his or her life just as I would for the rest of my kids, within the reasonable limits of his or her medical condition. Meaning, if the condition made my child physically incapable of walking, I would not be making a lot of plans surrounding playing soccer, as an example. If my child was deaf as a result of his or her condition, plans would likely include school at the deaf school or something like that.
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Old 03-12-2013, 09:07 AM   #13
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Re: WWDY if your child had a life shortening genetic disorder?

I wouldn't participate in painful medical treatment unless it was going to make my child much more comfortable in the long run.

I would do occupational therapy though, because I feel like that would make him or her more comfortable.

I had a friend who's baby was born with only a brain stem, and not much of a brain at all... she was only expected to live a very short time. (a few months) But, they did so many painful procedures on her, and while she survived for almost a year, much of that was recovering from something painful....they wished later that they hadn't put her through those things.

I would do all necessary procedures, I would do all necessary medications and therapies, but no surgeries that won't likely change the outcome.
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Old 03-12-2013, 09:18 AM   #14
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Re: WWDY if your child had a life shortening genetic disorder?

Quote:
Originally Posted by PurpleFluff View Post
My daughter who we are adopting has cystic fibrosis. The life expectancy is much better with recent breakthroughs, but average is still about 38 years. Our situation is different because we adopted her knowing her condition and prognosis. Thankfully, her specific mutations result in a milder than normal disease, so her prognosis is for a full happy life.
You guys are amazing

I know someone whose daughter has a rare blood condition that basically shortened her lifespan. She has a normal life otherwise but when I see her deep down I can't help but feel so sad for her and the parents. She might see her 40th birthday. She may not. I just can't imagine what people go through in a situation like that...
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Old 03-12-2013, 09:24 AM   #15
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Re: WWDY if your child had a life shortening genetic disorder?

I would do everything available to make their life as comfortable as possible. That age is just an estimate. I went to school with a girl that her parents were told wouldn't see her second birthday, I saw her at Wal-Mart recently, we are both 27 now.
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Old 03-12-2013, 09:25 AM   #16
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Re: WWDY if your child had a life shortening genetic disorder?

I worked with a woman who was told all her babies with her husband would have a limited life expectancy full of medical issues. She had 2 children with him. Both were, as expected, dealing with severe medical issues. Emergency ER visits were regular and life threatening. So much so she and her husband had permision to exceed speed limit rather than wait for an ambulance. I am not sure how that worked but it is what she told us. By the time I met her both her children had exceeded life expectancy and, for them, were doing well.

So I think I would continue planning as though they would live a long life. As with any child medical treatment would be based on how it would improve their life. Sometimes the treatments are worse than the disease.
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Old 03-12-2013, 09:28 AM   #17
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Re: WWDY if your child had a life shortening genetic disorder?

I forgot a woman I listened to. She was told by her doctor she only had a year to live. She quit her job so she could spend her last year doing what she loved to do. She devoted her life to god. When I listened to her tell her life story she was an old woman now. She had far surpassed her 1 year mark and had outlived her doctor. She didn't regret her choice though.

Sometimes these estimates are pretty accurate. Sometimes though they don't mean anything.
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Old 03-12-2013, 09:29 AM   #18
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As PP has said, I would research any and all treatment options. Those that have proven some success in improving life expectancy and/or quality of life I would absolutely persue. I would absolutely do physical/occupational/speech/etc therapies as I believe those do improve quality of life in most cases. As far as savings, I would treat that child as I would any other. If a time came that the child was clearly not going to make it to college or whatever the savings was for, I would use it to enjoy the remainder of our time together.

Typos courtesy of my "smart" phone.
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Old 03-12-2013, 09:43 AM   #19
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Re: WWDY if your child had a life shortening genetic disorder?

Thank you everyone for replying it's nice to hear the different opinions of everyone and the thought process behind it.

We got the results from our son's genetic testing last week and were told he has a very rare recessive genetic disorder called Fanconi Anemia it has been a shock and is a grieving process for sure just as someone above said.

Anyway I posted this because yesterday we were at a Mom & Tot group and I was chatting with some mom's. As normal everyone had questions about him because he's 18 months but tiny because of his being a micro preemie and his ability being that of a 7 month old. Well I mentioned his recent diagnosis after chatting with these Mom's for a while and feeling comfortable enough and the Mom's reply was why would we do treatments, and covered therapies when he's "just going to die soon anyway" she said it is selfish of us and "is taking resources away from a child who could use it and live a full life" it was a waste. Her friend agreed with her.

I was shocked and so hurt, I still can't believe another mother would say that to someone and with the baby right there. Even if she truly thinks that does she have to say it to someone who's living it.

It just was shocking to me too that someone would feel and think that.

We are going to do whatever treatments we feel necessary and that will make him comfortable and improve his daily life. We are saving for his adulthood with a disability savings plan which he can use for whatever he might need, school, home, therapy etc.

We feel blessed to have him and are optimistic of the possible advances in medicine in his lifetime and will cherish every moment with him be it 20 or 80 years.
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Old 03-12-2013, 10:00 AM   #20
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Re: WWDY if your child had a life shortening genetic disorder?

WTH?!?!? I am sooo sorry you had to deal with 2 very blind and selfish women!!

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