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Cystic hygroma

Des1422Des1422 member
in High-Risk Pregnancy
we just learned at our 12 wk US that the baby's neck is measuring larger than it should and the dr believes it's a case of cystic hygroma. It was like the air was punched out of my body- she frightened my husband and I and said we have to immediately go to the hospital for a second opinion and to have the CVS done to determine if we want to proceed with the oorgenancy or not. It's been an emotional 24hrs. We're scheduled to go in the morning to meet with the genetic counselor and do the CVS. Literature on this has not been comforting. Does anyone have information or personal experiences they can share about their experience with CH?? We're praying that all turns out well.
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Re: Cystic hygroma

  • Ceridwen77Ceridwen77 member
    edited July 2015
    I don't have any experience with this but wanted to wish you the best. Let us know how your appointment goes and the results of the cvs.

    ETA: I did some reading and it looks like in 30% of cases this will resolve spontaneously on its own. I would recommend staying away from dr. Google and writing down your questions for your counseling session. Keep thinking positively.
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  • Des1422Des1422 member
    Thank you @Ceridwen77 I'll keep you posted on how tomorrow goes... And I read that too! Praying that were a part of that 30%!
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  • SouthernYankee87SouthernYankee87 member
    @Des1422 - I'm sorry you are dealing with this.  

    I do have experience with CH.  With my first pregnancy, a (very large) CH was found during the 12 week ultrasound, in addition to a severley elevated heart rate.  We had the CVS done and met with genetic counselors.  We were told that roughly 50% of CH result from a chromosome abnormality, 25% result from a hole in the heart that can usually be fixed after birth, and 25% are spontaneous and resolve themselves before birth.  

    Have the CVS done, and speak to numerous genetic counselors (we talked with 2 at our hospital and we talked to a 3rd from another state/city that I dealt with in past).  Then wait for the definitive results to determine your next steps, if any are necessary.  I wish you all the strength to get through the CVS and the painstaking wait for the results.  I hope you have the best outcome possible.  Feel free to PM if you want more info on my experience.  

    Good luck to you. I'll keep you in my thoughts.  

        

     
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  • NoochStewartNoochStewart member
    We too have/had the unfortunate experience hearing the same news as you. Please do not be surprised if the Dr's and counselors seem very discouraging or pessimistic, it is their job to tell you the different outcomes and paths you can potentially have/go down. I didn't understand that at first and was very angry with all of the staff every turn we took. You're going to want to do research but STAY OFF THE INTERNET! That would be my one piece of advice. Until you have a concrete answer as to why the hygroma is present such as a heart defect or chromosome abnormality then there is nothing for you to research. We had the cvs, microarray and noonans test done(knowing that it was a boy), as well as multiple echocardiograms on the baby. All of our test were coming back negative which all seemed like great hurdles. We went for sonograms every 2-4 weeks to monitor the CH which was measuring significant at every sono from neck to mid back and towards the shoulders. It wasn't until week 28 we received amazing news that the CH resolved itself. I am now full term and anxiously awaiting the arrival of our beautiful baby boy! To think the amount of times and the multiple doctors that asked us if termination was an option makes me sick to my stomach. Don't get me wrong we are not out of the woods until that baby is in our arms and all tests are done to make sure the hygroma didn't interfere with any development. I pray for a beautiful outcome for you and your family. Do not give up hope, your days will seem dark and you will feel like waiting for these results will take a lifetime. Pray and stay positive. My mother put it perfectly for me she said "no matter what kind of disorder or handicap this baby is born with it will be our new "normal"".
    Prayers coming your way
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  • mrsnicolerodriguezmrsnicolerodriguez member
    I also had a baby with cystic hygroma and hypoplastic right ventricle (heart defect). I would be more than willing to talk with you about our situation if you want/need. Praying for you and baby.
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  • cnf2013cnf2013 member
    How did your appointment go? 

    We had a fluid behind the head on a 10w ultrasound and ended up at the peri for a CVS as well. They did an NT first though and all the measurements came back normal. We opted out of the CVS last minute for Harmony instead and those results have told us baby is fine, doubley confirmed at our a/s. 

    I hope you got good news. 

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  • lety76lety76 member
    I had the same diagnosis at 12 weeks but the issue resolved itself at 14 weeks. The NT scan came back normal two weeks later.
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  • asnyder754asnyder754 member
    I currently am 15 weeks with a little girl. She has a cystic Hygroma which we found at 10 weeks. We had maternit21 testing done and that came back positive for Turners Syndrome.

    We are still in the watch and wait period. We were told that once we hit 20weeks her chances will increase! So we are anxiously counting down the days.
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