[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Jessica on 10/27/2007, 6:44 pm, in reply to "Re: mosaic trisomy 22"
71.207.14.57
I am 20 years old and i have mosaic trisomy 22. I was dinogised with a skin patch before i turned a year old. I am one of the lucky ones. I have a very bad hearing loss and bad joints. I have just found out tonight from my dad that there aren't many of us alive anymore. 20 years ago John hopkins told my parents there were only 15 of us living with mosaic trisomy 22. Now, 20 years later there's still only 15 of us living. I pray for those who haven't found out yet and for those who are no longer with us.
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: Just an hour ago, my unborn son was
: given the diagnosis of Trisomy 22. I
: am still numb. I am 8 months pregnant
: and this is my first child. Me and the
: father are beside ourselves. While the
: information reads its not a genetic
: issue, its really hard to say its not
: me b/c the father has a son from a
: previous relationship who is just
: perfect. The guilt it just about to
: take me over. If you noticed by email
: adress, you can see I am a young
: widow. I just want to know who in hell
: did I piss off.
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: I am 21 weeks pregnant and just got a
: dianosis of Mosaic trisomy 22 for my
: unborn son. Is there anyone out there
: that got there dianosis prenatally, or
: any abnormalities picked up via
: sonograms during your pregnancy?
:
: I KNOW THE SICK FEELING YOU HAVE.
: I WON'T TELL YOU WHAT I HEARD SO MUCH
: OF BUT I DO WANT TO TELL YOU THIS.
: THIS CHILD WILL BE YOUR GREATEST LOVE.
: MY DAUGHTER GOT THIS FROM MY DNA LINE
: UP. IF YOU WANT TO GET DOWN TO IT IT
: IS MY FAULT. YET AS I GREW TO
: UNDERSTAND MORE AND YOU WILL TOO IT
: CAN HAPPEN TO ANYONE. WE FOUND OUT
: AFTER SHE WAS BORN,THEY SENT HER 3HRS
: AWAY TO VANDERBUILT.THERE THEY SD
: HORRIBLE THINGS THAT WERE SO HARD TO
: HEAR AFTER WHAT WE HAD JUST BEEN
: THROUGH BUT THE DRS WERE LIFE SAVERS.
: PLEASE REMEMBER THEY HAVE TO TELL YOU
: THE WORST CASE. JUST IN CASE. MY HEART
: GOES OUT TO YOU BECAUSE THE FIRST FEW
: MONTHS WERE SO HARD BUT BE STRONG
: THERE IS A BEAUTIFUL LIFE INSIDE YOU
: STILL.
: Thanx for the encouragement. I have
: about 2 or 3 weeks to go. I don't know
: what to do. Should I still put his
: room together or not? My late husband
: has been gone 4.5 yrs and it was only
: 2 months ago that I started to finally
: move out SOME of this clothes and I
: had to have help doing that! I can't
: even imagine putting his room together
: and him NEVER sleeping in it &
: then having to look at it. Sigh. Thanx
: for listening.
: hi glad you are well. About the room I
: think yes, make your home ready for
: your child. You are strong,and
: hopefully the father will be strong
: for you and your son. If the worst
: does happen but I don't think it will
: atleast you will have welcomed him
: with both arms wide. the old saying
: work here one day at a time and most
: inportant try to keep some joy in your
: heart.
:
:
:
:
: I am Rebekah's friend, and my son
: lived for 7 days before he passed
: away. We knew there were problems
: from 30 w on. He was born 7/26 at 34w
: 2d due to placental abruption. My
: beautiful boy was a fighter beating
: the odds to be born alive. He had a
: deformed ear, short neck with extra
: skin, 2 thumbs on his left hand,
: rocker bottom feet, 1 malformed
: kidney, an ASD, a VSD, an enlarged
: left ventricle, and coarctation of the
: aorta, plus other things. The
: coarctation was the fatal anomaly.
: The doctors kept the ductus open using
: prostin, but that started to flood his
: lungs with blood on day 5. They
: didn't recommend surgery because of
: the kidney problem and prematurity.
: More than likely he would not have
: survived the trip or the surgery as we
: don't have local ped. cardiac
: surgeons. We did not prepare his room
: and I'm glad that we didn't. It is
: hard enough looking at the crib and
: carseat that he'll never use. When he
: passed Daddy was holding him and I was
: holding his head in my hand singing to
: him. He was looking at us for the last
: hour and a half (the first time he
: kept his eyes open for that long). I
: think he knew we were there and was
: comforted by that. I am so glad that
: God has given us the resurrection
: hope, but that doesn't mean that my
: heart has not been ripped out. I
: don't see how I'll ever feel complete
: again. My three beautiful daughters
: are also having difficulty with the
: loss of their brother. I feel for
: those of you who have been diagnosed
: with this, but I would not give up the
: 7 days we had for anything.
:
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