Trisomy 18

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Trisomy 18

Postby jessie2354 » Wed Jul 21, 2010 7:10 pm

We found out recently that our little boy has trisomy 18. We're trying to stay positive about his diagnosis, but its hard because all the websites only talk about mortality rates and not survival.

I was wondering if anyone had any survival stories. Please positive survival stories needed!
Me 22 DH 26, DS Aiden James born into heaven 11/5/10 2 Fur babies: Shadow and Missy 3&nbsp;MC's (June09, Oct09, March11)<br /><br />Baby #2 Due Decemeber 20th!
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Postby lizzen » Wed Jul 21, 2010 7:54 pm

I don't have any personal experience with Trisomy 18 to offer. When I was pregnant with my third baby and notified of some abnormal quad screen results, I visited several blogs written by mothers of T18 babies. While they may not reassure you, they may give you some comfort during this difficult time. Here is one that you might want to visit, though:

http://annabelgrace.blogspot.com/

She's beautiful. :hb:

I'm sorry that you've been given such difficult news. Is the diagnosis confirmed through amnio?
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Postby jessie2354 » Wed Jul 21, 2010 8:04 pm

Yes it was found through amniocentesis. They noticed Aiden was growing 3 wks behind at 19 wks. The Drs assured me that they were 99% sure he didn't have chromosome defects and was normal but needed to do the test to rule it out so they could test for other things. Then it came back positive and the perenatal specialist tried to convince me I had to abort.

Thankfully my normal OB was much more supportive and is behind us all the way in continuing.

We love our baby boy more than anything and are so grateful to have him, even if it's only for a day.
Me 22 DH 26, DS Aiden James born into heaven 11/5/10 2 Fur babies: Shadow and Missy 3&nbsp;MC's (June09, Oct09, March11)<br /><br />Baby #2 Due Decemeber 20th!
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Postby Lizc0002 » Thu Jul 22, 2010 1:17 pm

I am so sorry for your son's diagnosis, and I admire you for your decision to carry to term. I was faced with a possible diagnosis of a genetic disorder when they diagnosed my son with ventriculomegaly and I decided right then and there I was carrying to term no matter what. I was very blessed that it did turn out to be benign and he is fine. My heart aches for you.....

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Postby LMS172 » Thu Jul 22, 2010 2:06 pm

I don't have any personal experience with Trisomy 18 either but I did lose 2 prior pregnancies to trisomy 15 and 22. Both of those trisomies have a 0% survival rate, though.

In doing research on them I found the trisomy 18 organization. There are some positive stories on there and there are also message boards and a lot of information.
If you haven't visited this site yet, you may want to check it out.


http://www.trisomy18.org/site/News2?news_iv_ctrl=0&cmd=articles&page=NewsArticle&security=2001&id=5125&start=4

Is it confirmed full trisomy or is there a chance of partial or mosaic?


:hugs: to you. I admire your decision to carry to term as well. Don't give up hope!
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Postby jessie2354 » Thu Jul 22, 2010 4:34 pm

Yes it was found through amniocentesis. They noticed Aiden was growing 3 wks behind at 19 wks. The Drs assured me that they were 99% sure he didn't have chromosome defects and was normal but needed to do the test to rule it out so they could test for other things. Then it came back positive and the perenatal specialist tried to convince me I had to abort.

Thankfully my normal OB was much more supportive and is behind us all the way in continuing.

We love our baby boy more than anything and are so grateful to have him, even if it's only for a day.
Me 22 DH 26, DS Aiden James born into heaven 11/5/10 2 Fur babies: Shadow and Missy 3&nbsp;MC's (June09, Oct09, March11)<br /><br />Baby #2 Due Decemeber 20th!
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Postby betafish25 » Sat Jul 24, 2010 11:48 am

Hi I wanted to say I am so sorry to hear that you found your son has trisomy 18. My ds was born in dec with partial tetrasomy 22 or cat eye syndrome, while not a fatal diagnosis actually usually quite the opposite, my ds was born with all the more rare and life threatening anomalies. I too found out prenatally but had no idea the extent of his anomalies since none other than his heart defect could be detected by u/s. I tell you all this because just the other day as I was talking to his pediatrician about his syndrome she mentioned she treats a patient who has trisomy18. I was like "and they are still living" and she said that yes she is two years old. So there is definitely hope and I say go with what your heart tells you. It is a long difficult journey but you will be blessed in ways beyond your imagination. For me, when I found out.. I thought my life was over and that I would never be able to handle the situation.. I look back now and realize you never know what you can handle until you are right in the midst of the storm. God bless you and your baby for he does have a plan. Feel free to pm me if you have any questions or just need to talk.
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Postby kierann » Tue Jul 27, 2010 5:37 am

I am so sorry to hear you are going through this. I am facing a possible trisomy 18 diagnosis right now with a 1in15 chance of having it through triple screen test. On U/S they could not see enough to give me enough reassurance so looks like I am having an amnio today. When I was first told this news I was given no info about it from the professionals that was good. However, I did find some stories that seem to defy the odds. I found where one boy was 8 years old with it. I believe this is rare to occur but if you plan on having the baby then hold on to any positive stories you can find.
Me 40 DH 41 TTC #1 Since Feb 09 Me - Elevated FSH After CCT DH - 5% morphology 2/10 - Failed Clomid/IUI Cycle 4/10 - Femera/Follistim BFP!!! Due Date 12/24/2010 Baby Girl Born 12/22/10 6 lbs 13 oz Natural BFP May 2011 Miscarriage at 8weeks 4 days
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Postby mrsjoh » Wed Jul 28, 2010 8:21 am

A mom in my heart group, her brother had a daughter with trisomy 18, she lived until about 5 years I believe. Having a child with severe medical problems is a challenge, but I wouldn't have given it up for the world and feel blessed for all the time I had with my son. Wish you the best.
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby jenabirdcm » Wed Jul 28, 2010 6:54 pm

Unfortunately my Trisomy 18 story isn't a survival one. My daughter Maggie was born 5/5/08 and passed away on 10/4/08. We didn't know that she had T18 until after she was born. The most important thing i can tell you is that when he is born you need to do what is right for your family and don't give up on that baby. He is and will always be the most precious thing in your life. Fight for him. It has been almost 2 years since I lost my Maggie and I still feel like I let too many other people make the decisions about her. That I didn't fight enough for her. Sorry to get off on that tangent.

Here is a Trisomy 18 blog that i love to read.

http://sweet-annabel-leigh.blogspot.com/

Good Luck and best wishes for your sweet boy.
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Postby mrsjoh » Thu Jul 29, 2010 11:03 am

jenabirdcm* I have a lot of guilt over decision making too. We had a lot of complicated decisions to make too, I try to focus on - we made the best decision with the information we had - but it is hard. All the grieving books I have read about child loss have talked about parents feeling guilt and that is the hardest thing.
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby babyfeet3 » Mon Aug 30, 2010 12:32 pm

Congratulations on your pregnancy! We had a little girl last year who was diagnosed at 28 weeks with T18, it seems our experience was pretty similar in that the genetic counselor and specialists urged us to abort even at 28 weeks. There was never a thought that we would do that as we people of faith and didnt want to make a decision we felt wasnt ours (please know I do not judge anyone with a different opinion or who chose otherwise) Our Gianna was the best blessing we have ever had. We were told horrible things and were treated horribly for wanting to fight for her but we did and we faught hard! In our hearts, minds and the lives of others so many were touched across the world by her short but meaninful life here. She was 5 months old when she gained her angel wings. I try not to focus on the length of her life on earth but the impact it made in that time. Some people live to be 100 and have not put a dent in the lessons our angel has taught us and many others. You can Inbox me anytime with anything. I have been through any and every possible emotion, thought, confliction and I know it is not easy. Take care and stay strong.
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DD#1 Jasmyn Anissa-2/20/97
DD#2 Gianna Lianne -born 1/22/09 gained her wings 6/29/2009 had Trisomy 18
DS-Ty Alexander- 9/23/2010
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