Trisomy 18

I had a baby that was born with Trisomy 18 and I didn't know until she was 6 days old... While I was still pregnant there were a lot of signs... My first ultrasound I had an abnormally shaped egg yolk and they told me that put me at increased risk for miscarriage, then at the next one they told me that she had a choroid plexus cyst, and then I found out that she had Single umbilical artery, and she was not growing like a baby is supposed to... I would like to know with all of these things that went wrong, should my doctor have done an amniocentesis so I would have known about this before I had her?

[Helen72]

After chorid plexus cyst was found, your ob should have suggested amnio since it's a known marker for trisomy 18.

I am so sorry for your loss!

[kris182]

whats trisomy 18

[getlykemc10]

Yes your doctor should have definitely performed an amnio on you. When I was 19 weeks pregnant with my son they suspected that he had it & gave me an amnio. Luckily he was fine but I was told that in cases where Trisomy 18 is suspected they always do an amnio because of the risks to the baby during and after pregnancy.

"Trisomy 18, also called Edwards syndrome, is a chromosomal condition associated with severe intellectual disability and abnormalities in many parts of the body. Individuals with trisomy 18 often have a low birth weight; a small, abnormally shaped head; a small jaw and mouth; clenched fists with overlapping fingers; heart defects; and abnormalities of other organs. Due to the presence of several life-threatening medical problems, many infants with trisomy 18 die within their first month. Five percent to 10 percent of children with this condition live past their first year."

[ejbraelyn]

I'm trying to decide if I should consult in legal help. This was my first child and she passed away on June 10, 2010 when she was two weeks old. I have a website for her at http://www.caringbridge.org/visit/braelynbrown/mystory  Please visit and read all of the information and let me know what you all think I should do

[have 2 kids]

I just read your caringbridge site.   What a great honor you did for your daughter.   Honestly I don't think I would persue anything farther.   Even if the Dr had performed an amnio it wouldn't have changed the outcome.    I would focus on the precious time you had with your daughter.    I am very sorry for your loss.  

[ejbraelyn]

I agree, knowing wouldn't have changed anything, but I wouldn't have went 6 days thinking that my baby was ok when she wasn't. I would have had time to prepare mentally and financially before she was born, instead of finding out 8 days before she passed. Funerals are not cheap, neither is taking a month off of work when your boyfriend only expected to be out for a week. Now we are month behind on bills and I'm not in the best mental place right now. NO ONE should have to go through what we went through, and I feel If i can prevent another parent from going through this, then I should. I love the time that we had with our daughter but maybe if I would have know before hand I wouldn't have taken my pregnancy for granted, or the first 6 days of her life that I thought she was going to be a normal baby and grow up to live a normal life. I would have taken thousands more pictures and I would have made sure I got to bring her home sooner than I did. It's not that it would have changed her outcome, but it would have changed things I did on my part.

[have 2 kids]

I can feel your pain through your writing.   I'm sure you did not take things for granted- I think you are putting too much pressure on yourself.    I am so sorry you are going through this.    There is a forum called "angel babies"  maybe when the time feels right you could join and find some additional support from moms that have also lost children.  Rachel is the community leader for it and is a wonderful caring person and I'm sure she would talk to you and listen.   I'm here for you too if you want a neutral person to talk to - you can always pm me.