![]()
| Author | Comment | |||
|---|---|---|---|---|
abygal80 |
Turners syndrome prognosis |
Lead | ||
|
Hello everyone, I am a brand new member. I am 13 weeks 5 days and last week I was told my baby girl has 45,X, otherwise known as Turner Syndrome. 98% of
babies with Turners abort in the first trimester, and those who make it to the second trimester usually abort due to sever lymphedema or cystic hygromas. My
baby has a cystic hygroma on her neck which was the reason they sensed a problem at my nuchal translucency screening. I had a CVS which was where I received
her diagnosis. At my ultrasound appointment yesterday, the hygroma had grown from a 5.7 to a 9 in two weeks. I was told by the doctor that she would likely
abort and that I should not be surprised if thats the case. Now I am faced with the decision of either waiting till it happens, or termination. I am not
comfortable with either one, however, I can not continue to become more and more attached to this baby; if I lose her months from now I will be even more
traumatized than I could even imagine. No matter how long and hard I think of this, I can not make sense of it all. In my heart, I feel we need to let her
go, but there is always part of me that wonders if I am making the wrong decision. It seems the odds have been against us since day one though, and I just
need to accept it as it is. I know many if not all of you have struggled in your decisions and I just need some guidance from those of you who have been there
and how long it took you to finally move on. I am scared that I'll never be able to forgive myself. I also don't see alot about Turners here, so I
was curious about anyone else who has a baby who was diagnosed with Turners. Thank you.
|
||||
|
|
||||
saudieboy |
#1 | |||
|
hi i'm really sorry you're here & have gotten bad news. your post sounds like what i went thru. at our 3rd month u/s they discovered the cyctis
hygroma, it was so obvious that without any further testing they told us we had 70% chance that things were bad. did a cvs and found out that yes our baby had
turners syndrome. they told me the same thing about the 90% m/c rate in first trimester - but since we got that far, things might be better & if we chose
to continue they would monitor me closely. my gut instantly told me i couldn't progress & nor did i want to find out what possibly more could be wrong,
and get more attached & also for religious reasons we couldn't have too long of a delay, i know that a TS baby can have serious heart problems, liver
or kidney problem - (not sure which of the 2) - they are not likely taller than 4'9, it's always a girl & they can never conceive -they don't
produce eggs, and other issues. it's not an easy decision, but i know these were things i couldn't let by girl suffer thru & if i chose to continue
the possiblity of always m/c even if we made it to 8.5 months was very real. the grief i suffered & stress during the time from the u/s till the results of
the cvs - about 3 weeks were already too much & the thought of getting more attached as i grew even bigger & felt the baby more was not something even
my husband was wanting me to go thru. we got the results on a friday - and on a wednesday gave our baby back to god., it might seem like a short time period,
but they really didn't give us any hope since the first u/s for good news. it's a very hard decision to make, and one fine gal said - we choose to
suffer so our babies wouldn't have to. you can always email me directly if you desire, just click on my picture. sending you love & strength during
this horrible time a'ishah
|
||||
|
|
||||
hochie |
#2 | |||
|
HI--
(LC Mentioned) I never check this forum- but I saw the "Turner's" in the posting and I was curious. I too, had a baby that was diagnosed with Turner's-- at 13 weeks. The baby was also diagnosed b/c it had a cystic hygroma that was at N 11. I had an immediate CVS done and the baby was diagnosed as a mosaic Turner's - basically a mixture of Turner's and another diagnosis-- XXX syndrome. It is an interesting mixture, as XXX girls tend to be unusually tall (and Turner's girls are unusually short). XXX girls also can have mental retardation and behavioral issues. And Turners girls can have heart problems, spatial reasoning issues, and are infertile. I honestly did not know what to do, as most likely, my baby would have made it to birth due to the mixture of traits. But, because of the great unknown, we decided to terminate at 16 weeks-- I did not even watch to see whether the cystic hygroma ever resolved, b/c I had the CVS results. And, I feel extremely confident that our decision was the right one for our family. Now, after a period of infertility, subsequent miscarriages and struggle, I have a healthy little girl. She is the little girl that I was meant to have. I have forgiven myself b/c I truly believe that I did the right thing and my daughter would not be here but for that series of events. HTH and feel free to email me anytime. Jamie |
||||
|
|
||||
christydpt |
#3 | |||
|
Abygal80, if you're struggling and feel like you might not forgive yourself if you choose to terminate, then maybe that's your answer. There's
nothing wrong with letting yourself get attached to your baby. She's your daughter and you'll love her no matter how long she's with you. I wish
you lots of peace in this difficult decision.
|
||||
|
|
||||
katsac |
#4 | |||
|
I too dont check this area often but saw the Turners Syndrome & wanted to read & now respond as well. First I am so sorry. It is horrible & gut
retching. We all know too well what that feels like & I am so very sorry. Our daughter was diagnosed with Turners Syndrome & the ultrasounds were
actually showing everything to be ok. Our diagnosis was considered an "Incidental finding" because we were actually testing for something else. The
other testing came back bad as well & so we did end the pg but I can tell you that during the timeframe that we only knew of the TS we were so lost &
didnt know what to do either. We were told the same info about TS & the stats on the m/c rate too. We were discussing ending the pg & giving our little
girl back to God when the other test results came in so even with the Turners alone that appeared to be the choice we were facing as well. Like pp have said I
didnt want our little girl to suffer. I had been bleeding off & on even so I wonder how long she would have made it had we not let her go when we did. It
is so hard & such a personal choice that only YOU can make. We chose to let our little girl go at 16wks. It was the hardest thing I have ever had to do but
it was the right decision for us. Again, I am so sorry you are faced with this & I wish you much peace in this heartbreaking decision that only you can
make.
|
||||
|
|
||||
loveofcali |
#5 | |||
|
Hello, I am 12 weeks, and I also just got some horrible news from my combined screening. Mine doesn't appear to be Turner's Syndrome (although that is
a possibility until I get the final word from the CVS), but it's more likely a Trisomy 13 or Trisomy 18 diagnosis. I have been told by multiple
perinatalogists and genetics counselors that this is a diagnosis that is incompatible with life. This pregnancy will end either in a miscarriage, a still birth
or in the best case scenario the baby will live a few hours to a few days in the hospital. I've been bleeding since my 5th week, so the situation had
already been touch and go. So, I can really relate. I truly believe that you need to do what you feel is right. I truly don't think any choice families
make given this diagnosis is going to be a good one. No matter what we do, we'll be filled with pain, sadness, fear and guilt. Every single option is a
horrible one. So, my only advice is to do what you feel is best for you and your partner. Don't make a decision based on what you think will make the pain,
sadness and/or guilt go away, because I don't think that any choice will make all of those things go away. We're going to make a decision based on what
we think is best for us both emotionally and physically at this time, but no matter what course is taken, the end is pretty bleak. I feel so much for all that
you're going through, just know that I'm going through the very same thing at this time. Please feel free to send me a personal email if you want to be
in touch. I'd never heard about anyone I know facing this situation before, so I'm hoping this discussion forum will help. I think it's only
natural to feel isolated and alone, that's how I've been feeling a lot lately. It's still hard for me to believe this is really happening to me.
Take very good care, and know that you have support out there from many of us.
|
||||
|
|
||||
boobookittyx3 |
#6 | |||
|
I was in your exact position once. I went in for first trimester screening on the last day they could do it. I kept putting it off thinking that the test would
not make a difference anyway. Within seconds they found a very large cystic hygroma on the back of my baby's neck. A CVS confirmed that it was TS. It also
confirmed that she had two other chromosome abnormalities in 80% of her cells. We were told the m/c rate was 99.9% and that fact she had made it this far was
unusual. They doubted that she would make it more than a couple more weeks as her CH was already 10mm.
We decided that the best thing for us to do was to end the pregnancy. I could not live each day wondering if this would be the end, and I was able to think of little else. While I know it is not the best choice for everyone, it was for us. I was able to let my daughter go in my own way, and I was able to preserve my own health. No one can tell you what the best choice for you and your family should be, but if you choose to take the path of AHC we are here to support you. |
||||
|
|
||||
abygal80 |
#7 | |||
|
Hello everyone. I just wanted to say thank you very much for all of the support and guidance you have given me. I experienced some very sharp pains in my
abdomen last night which made me concerned about the baby's well -being. I had another ultrasound to make sure she was still with me, and though they found
a heartbeat, the hygroma had completely engulfed her whole body, which I believe is fetal hydrops. Though I could not look at the screen, my husband did and he
said it looked like she was in a sack. They gave her two more weeks, if that. It was very hard to hear, but now we know that the decision we are making is the
right one. I love Fiona with all of my heart, and now I can lay her to rest knowing I'm doing whats best for her. I'll be getting my procedure this
Friday at 14 weeks 6 days. I am still very scared. If there are some of you who had a D&E under IV sedation, please contact me and let me know your
experience. I could just use reassurance that me nor the baby will experience any pain. God bless
|
||||
|
|
||||
saudieboy |
#8 | |||
|
i'm really sad to read your post, i think a part of us still hopes that somehow things will be okay. i know with our d&e the dr told me, that when i
was put to sleep , the baby would go to sleep as well, she wouldn't suffer. i hope all goes as well as possible on friday & that you are treated with
the respect & compassionate you deserve. a'ishah
|
||||
|
|
||||
katsac |
#9 | |||
|
I was told the same thing that pp said. I am so very sorry. I have sent you a message. Your in my thoughts. If you havnt already started the steps, have you
considered joining the private area of boards?
|
||||
|
|
||||
serendipity |
other turner moms? | #10 | ||
|
I terminated due to a turners prognosis. That was in April. I am really having a hard time coming to terms with my decision, as my due date is coming up in
October. I would love to hear from others that have been through this.
|
||||
|
|
||||
boocat72 |
#11 | |||
|
Serendipity,
I am so sorry for your loss and that your are having a hard time coming to terms with it. I didn't tx for Turner's, but wanted to say that you should sign up to post in the main private forum--you will get more reponses from posters there. Please take care of yourself, Boocat |
||||
|
|
||||
beingstrong |
#12 | |||
|
serendipity,
i too terminated for tuners on 03/21/08 and my edd is 09/13/08, if you ever want to talk just shoot me an email! |
||||
|
|
||||