[tri-wings] Karly Rose Hutchison

After months of lurking on the Tri-Med list trying to learn as much as I could, 
here I am.? I think on some level I believed that if I just knew enough and 
gave enough, I'd get to keep her.? Karly passed away on 31 May.? Although I've 
known the morbidity rate (mortality rate?? I confuse those two...) was 90%, I 
was still shocked.? I truly believed that she was one of the 10% that was going 
to make it...or that the 90% was artificially high because many have been 
advised, as we had, to not treat aggressively.? It only makes sense that 
without treatment many will not make it.? 

Just the day before her death I was sharing with a friend the sense that I felt 
called to share that information with others who found themselves in my shoes.? 
I thought she was doing so well, at least "for someone with Trisomy 18."? I had 
chosen to follow my instincts and treat what clearly needed treated...i.e. she 
had heart surgery in January at 4 1/2 months old.? It was the best decision we 
could have possibly made since she was no longer suffering from congestive 
heart failure and could therefore breathe much easier.? It did not seem to me 
that surgery caused her suffering...and if it did, it was certainly not 
"useless suffering" as we had been told it would be when she was first 
diagnosed with Trisomy 18 and VSD at less that 1 week old.? I still have no 
doubt that we made the right choice about her heart surgery.? It made her life 
much better even if it was only for a short time.? I was convinced that it was 
vital that other?trisomy parents know that with treatment, the
 re is some survival.

I?still believe that, but now I realize that just treating the known problems 
doesn't necessarily mean you're in the clear, so to speak.? On one hand it 
seems like maybe there were signs that things weren't right but on the other, I 
felt (as many others did, including her doctors) that she was doing so well.? 
In fact, the emergency room doctor said to me as they were trying to save her, 
"Did you say she has Trisomy 18?? And she's 9 months old?? She looks good.? 
She's a miracle."? Yes, I know that.? I know that her death does not change 
that either.? But I am of 2 minds right now...One says, our children are not 
supposed to die, not before us and especially not so young.? The other says, 
she was not supposed to live 9 months, praise God for every moment I had with 
her and for those who were willing to treat her like anyone else.? I do believe 
that her heart surgery more than doubled her lifespan and gave me many precious 
moments and memories to hold onto.? Yet, the reality rem
 ains that it never was a "cure".? She was not meant to be a long term survivor 
in the way the world sees things, but in our book, she lived a lot longer than 
the NICU doctors told us she would and she had quality of life that many will 
probably never understand.? Those who met her understand.? She had the best 
smile and was so content...and not because she was a "vegetable" or "couldn't 
feel pain"...she cried when something didn't feel good, but she never 
complained just to complain:)

I miss her so much but I am disturbed some moments by how normal things already 
feel without her.? I do not want to feel this way!!!!!? She changed my life, 
she made me and my family better, I wanted to keep taking care of her even 
though I knew we were destined for challenges throughout her lifetime.? I want 
her back.? But, alas, it is not meant to be .? My heart is broken. ?I know it 
will heal but it will never be whole again.? Thanks for "listening"...

Kristy
mom to Kendra,11; Kayne, 9; Kristian, 3; and Karly, my angel at 9 mos. and 10 
days



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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