[tri-med] prenatally diagnosed t13 mosaic child

My responses are throughout, in italics to ditinguish them (I get the digest 
version, which is why several different messages are together).
    Date: Sun, 29 Oct 2006 10:16:00 -0800 (PST)
From: Michelle Wilson 
Subject: [tri-med] Re: New to list-please help


Hi Lisa, I know there is so much going through your
mind right now. But you have really found the right
place for guidance. This list can help you to follow
what is right for your family, but without judgement. 
I would just like to say that being told to terminate
by the drs is usually the standard. They don't
understand that there are survivors. Also, mental
retardation has many variations, but regardless of how
"retarded" a child is, I believe that they definitely
know they are here. They make demands! They smile! 
They give love! And they even get crabby when they
don't get their way. I know that you are probably
being urged to make a decision about the pregnancy
asap. But please do take a little time with that
decision so that you can gather all the information
possible and so that hopefully no matter what happens,
you won't have to look back with all the "what ifs". 
Of course there will always be those, but the more you
know now, the more your mind and heart can be settled
and you can make a concsious decision on your own, not
one that the drs make for you. Please listen to the
stories about the children on this list. They are
very unique, despite there "retardation". 

  I certainly agree with that. I worked with this one girl who is severely 
disabled - autism and CP, both fairly severe - and when I first met her she 
just sat there bobbing her head and I thought maybe she wasn't aware of 
anything. But she helps with dressing herself (standing holding on and moving 
her arm or leg when you tell her to) and when I was in the pool with her she 
had so much fun splashing. She splashed whenever anyone said splash - once we 
were standing near where a little kid was going to jump in and someone said to 
us "you'll get splashed" and she immediately started splashing vigorously! She 
led me around the pool where she wanted to go and when she wanted to get out 
would go to the side and climb out and shuffle over to her wheelchair and sit 
down.
  In the same program there's a boy with CP and severe delays who has far less 
motor skills than her, but he watches everything. Everyone seems to like him, 
he usually has a crowd of people around him. Once his partner got him a freezie 
and it was funny how surprised he looked when he realized how cold it was!
  
Peace and good will toward all things,
Michelle Wilson, mother to our BIG GIRL(ok, really the forever baby), 
Faren(t18, 6 yrs old!!), the Barbarian aka "The Booper" and Quenby, aka Poopie 
Chew. Oh, and wife to Rickeeeeee!

Patriotism is supporting your country all the time and your government when it 
deserves it. -Mark Twain

Oh, to have a lodge in some vast wilderness, where rumors of oppression and 
deceit, of unsuccessful and successful wars may never reach me anymore. 
-William Cowper, poet



____________________________________________________________________________________
Want to start your own business? Learn how on Yahoo! Small Business 
(http://smallbusiness.yahoo.com) 


------------------------------

Date: Sun, 29 Oct 2006 13:50:04 -0500
From: "Irene Smith" <67.irene@xxxxxxxxx>
Subject: [tri-med] Re: New to list-please help

On 10/29/06, lisa potash wrote:
>
> Hi- We just found out at 17 ½ weeks that our baby is positive after cvs
> and
> amnio for trisomy 13 mosaic.

Hi Lisa, I am so sorry you have to be here, but for your situation, this is
definitely the best place to be! This list has been a Godsend for most, if
not all of us!!!!!



We are at Northwestern which is supposed to be
> the best around. The doctors there and genetic counselors/ob's-pretty
> much
> everyone we have talked to encourages termination.



I don't want to push my own personal beliefs onto you, but I do want to say
that this is definitely the normal doctor response. I would bet pretty much
everyone who had a prenatal dx, got this very same response. You need to
make your OWN decision, whatever that may be. I think some parents actually 
think they really have no choice, because their child will most likely die 
anyway, but that is not true! First of all, they may not die, second of
all, no one can force you, or should push you towards any decision.
   
  I wrote a page on my website about this situation, which I called the Rare 
Syndrome Stereotype. I have since realized it's more complicated, being one of 
two stereotypes applied in varying forms to all disabled people - able disabled 
(heroic overcoming disability stories) and unable disabled (what I called the 
rare syndrome stereotype at first).

> I haven't found anything on the web either that is helping to make our 
  > decision to proceed. We are planning to wait the two weeks until the 
  > culture grows and have another ultrasound but are told to expect 
  > confirmation only. Our 17 week ultrasound showed nothing which they tell 
  > us means the bad cells are probably internal which is worse. The mosaic 
  > part makes it even harder since they say it masks the issues and 
  > sometimes prolongs them. As of today, I don't feel it is fair to try to 
have 
  > this baby born to just have it suffer and pass away so quickly. I am also 
  > afraid what effect that will have on the rest of our family. They tell us 
that 
  > mental retardation is almost a definite so it doesn't sound like the baby 
  > would even know it was here.

I am shocked that they would say something like that! Besides the "not knowing 
you" which is certainly not true of any developmentally delayed people, even 
the most severely delayed, they have been turning things backwards. They said 
that mosaic is worse because the child lives longer, and that the lack of 
external trisomy 13 features means there must be more internal features. The 
second is provably incorrect. There is no certainty with mosaicism. Each organ 
that is affected by trisomy 13 can, in a mosaic child, be anywhere from normal 
to the most severe effect t13 can cause. All that the lack of visible features 
of t13 on ultrasound means is that the child doesn't have some of the most 
obvious t13 visible features. It tells you nothing about how many medical 
problems they will suffer or how severe they will be, and tells you nothing 
about how the child will develop.
  Secondly, the part about mosaicism being worse because it "prolongs" the 
problems is basically expressing the attitude that there is nothing worthwhile 
about the life of a t13 child, and the sooner they die, the better. This is 
discrimination, the "better dead than disabled" attitude that hurts and kills 
so many disabled people. It reminds me of the person who said autism is worse 
than cancer because autistic people have a normal lifespan. As an autistic, I'm 
glad I have just as much chance as anyone else of living to 100. I'd much 
rather be autistic than have cancer. (My mom, whose mother died of ovarian 
cancer in her 40s, agrees.) People who say autism is worse than cancer for that 
reason, are saying there is no value in the life of autistic people.
  Check out the Living With Trisomy 13 site, it has advice for parents as well 
as many stories of t13 people who have lived past infancy - even one who is 40 
years old! I love the videos some of the parents have put on their child's 
page, especially the one where the girl kisses her mother and the other one 
where a different girl is enjoying listening to a guitar being played.
  Regarding the effect on the family - my perception is that it's not so much 
the kind of disability the child has, but how the family reacts. Some siblings 
of disabled children are very unhappy people, most of those people had parents 
who either focused too much on the disabled child to the exclusion of their 
siblings, had trouble accepting their child's disabilities, or both. Similarly, 
if the child dies, it can tear a family apart or bring them closer together. It 
can help children learn how to deal with death, or make every death harder 
because it reminds them of this loss. What makes the difference is how the 
family chooses to deal with the death. Talking about it, expressing your 
feelings, both the sad ones about their death and the good ones about the time 
you had with the child, and moving on when you are ready helps children learn 
important lessons about life that will help them when someone else they care 
about dies. It reminds me of some stuff I was thinking
 about my own struggles - I have been sexually abused by my cousins, 
emotionally abused by my teachers and bullied by kids my age. With regards to 
the sexual abuse, which came first, as soon as my parents found out, they 
stopped it, got me counseling and encouraged me to tell them if I was ever hurt 
again. From that, I learnt that I should seek help if I'm being abused, that 
what they did to me was not acceptable, and that it's not good to hide bad 
feelings. If they had not stopped it when they realized it was going on, or had 
stopped it and tried to forget it ever happened, I would have learnt to keep my 
pain secret and that it's acceptable for people to hurt me. Similarly, by 
homeschooling me when it became clear that the bullying was not going to stop, 
they taught me that I don't have to put up with verbal abuse - I can leave. Had 
they left my to try to cope with it whatever way I could, I would have learnt 
to pretend I don't hear verbal abuse, just push away the pain
 and leave it fester inside. I wish I had not been abused, but the lessons I 
learnt have made me who I am, and helped me greatly. I have lost pets who were 
just as important to me as any other family member, and would not have given up 
knowing them to be spared the pain of losing them, though I have felt that way 
when I was grieving. I have gotten a new kitten knowing that he will eventually 
die and that it will hurt me a lot, but while he lives (hopefully the usual 
10-20 years) I'll have had many wonderful times with him. He is a wonderful 
little boy and so full of mischief, and so incredibly cute!
  
I hate this response...the baby will most likely not know you....that is so
not true. They said that about my Caroline who has a partial trisomy 17.
Her condition is SO rare that I got all the same answers you did.....won't
live, will suffer, won't recognize us, ruin our lives, hard on our marriage,
etc etc etc. It is sometimes VERY hard, but not always! She is severely
affected, she did have a hard first year and still has many issues, but she
definitely knows who we are, she smiles, giggles, sits on her own for a
little while, and is still here 3 1/2 years later. It is sometimes a tough
life, and one I thought I could NEVER handle, but we do and have become a
stronger family because of her! Many days, our lives are fairly "normal"!

I can't help you on the mosaic questions because Caroline is a full partial
trisomy, although I have learned over the years how incredibly different
mosaics can be. There is NO way to predict. Some you wouldn't even know
had a chromosome disorder, others obviously face severe problems.

This is a very scary time. Don't get too caught up in all the statistics.
If the ultrasounds aren't showing any issues, it may be a sign there aren't
many issues, - not just a sign that the bad things are "internal", whatever
that means. Caroline had MANY findings on the ultrasound - low set ears,
possible severe heart issue, small chin, small gestational size. They were
wrong about the heart, but right about others.

Take care and please feel free to ask any and all questions!! We are all
here for you!!!!!
-- 
Irene
Christina (5), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site: http://www.caringbridge.org/visit/carolinesmith

  
From: "Rebecca Leonard" 
Subject: [tri-med] Re: New to list-please help
Date: Sun, 29 Oct 2006 15:46:43 -0700

lisa,

i am in a similar situation, as our baby was diagnosed with full trisomy 13 
at 20 weeks gestation (we are now 23 weeks). i cannot speak from the 
perspective of one who lives every day with a child with any sort of 
trisomy, BUT, i can speak as someone in a similar situation, who has also 
been scouring the internet for facts and insight!

i agree with everyone else's responses, that only you and your husband can 
make the decsion of whether or not to carry to term, however, these are a 
number of factors that contribute to our family's peace with our decision to 
go to term (or as close as we can get).

-although trisomy 13 manifests itself differently in every child, our 
dysmorphologist assured us that in most cases there is very little struggle 
and suffering (with apnea or cardiac failure, for example)

-none of us on this list are "severely retarded" (which is only a 
possibility, not a definite), so who is to say that our little ones' quality 
of life will be any less than a normal child? it is not like a child who is 
only paralyzed and knows that he can't run around like the other kids...does 
a severely developmentally delayed child know of and/or yearn for a "better" 
life? i can imagine it is hard for the parents of survivors not to project 
their own hopes and dreams and fears for their child onto him/her...but is 
that how the child feels?

  I'd like to point out that a physically disabled, cognitively normal person 
need not be any less happy due to greater awareness of disability. I've heard 
many quadriplegics talk about how they enjoy their life and hate the 
stereotypes that assume their life is unhappy. And people who seem unaware 
aren't always unaware - see Getting the Truth Out (and make sure to read all of 
it - there's a surprise). If they are aware they are different, what matters is 
how they view the difference. Obviously, someone who thinks of themselves as 
damaged or inferior will be unhappy, and that is the view society tends to 
assume everyone has of disability. But it's not the only way of viewing it. I 
think of myself as different and special, as a valuable person whose 
differences cause a unique and important perspective. The fact that I view 
autism this way means I am glad to be autistic.
  
-most importantly, i have not encountered a single person in our situation 
who regretted bringing their child to term. but whether or not their 
children survived and thrived, they found it a life-changing experience, 
and not one they would change. that says a lot. basically, be it good or 
bad, after seeing these sitess and being on this list, we are no longer in 
ignorance as to the possibilities for the children we are carrying. they 
may die...but they may survive!

you will be in my thoughts and prayers.

becca, wife to larry, mother to Nathan David (due Feb 21) full T13, and 
furbabies samson and delilah

                
---------------------------------
Ask a question on any topic and get answers from real people. Go to Yahoo! 
Answers. 

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

Other related posts: