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Bad news with the ultrasound.....cystic hygroma

After the joy of seeing our little peanut (9 weeks pregnant) on the ultrasound we were given the devastating news that there was a cystic hygroma detected.

Neither my husband or I really know anything about this.

As of now, we have an appt next week to get another ultrasound to see if the cystic hygroma is still there. If it is, we will be scheduled for a CVS...and go from there.

Can anyone share any info, tips, advice, questions to ask the doctor...etc.?
So far the research I did on the internet is pretty grim... :-(

 

Edit:  I REALLY appreciate the supporting messages, mommas.  But, can you please just send me info and personal experiences?  I have done my own research on the internet and spoke briefly to a doctor at the appointment.  It looks grim so far.  Sometimes the internet will only give you the negatives.  That's why I came here to ask for people's personal advice.

xoxo

Answer Question
 
Munchkin09

Asked by Munchkin09 at 8:43 AM on Apr. 8, 2011 in Pregnancy

Level 4 (28 Credits)
Answers (10)
  • Cystic hygroma
    URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000148.htm
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    A cystic hygroma is a mass that commonly occurs in the head and neck area. It is a birth defect.
    Causes
    A cystic hygroma occurs as the baby grows in the womb. It forms from pieces of material that carry fluid and white blood cells. Such material is called embryonic lymphatic tissue. After birth, a cystic hygroma usually looks like a soft bulge under the skin. The cyst may not be recognized at birth. It typically grows as the child does, and sometimes is not noticed until the child is older.
    Sometimes, a cystic hygroma is seen when the baby is still in the womb using a pregnancy ultrasound. This can mean that the baby has a chromosomal problem or other birth defects.
    Symptoms
    A common symptom is a neck mass found at birth, or discovered later in an infant after an upper respirat
    feralkitten

    Answer by feralkitten at 8:54 AM on Apr. 8, 2011

  • Well, what do you want to do hun? I hope you get a second opinion. I don't know much about the condition, but with anything like this, ALWAYS get a second opinion. You will feel more grounded in whatever decision you make.

    I hope you have a great support system, and lots of loving people in your life to help you through this! Best Wishes for you!
    Musicmom80

    Answer by Musicmom80 at 9:34 AM on Apr. 8, 2011

  • dienkies, she's talking about something completly different.
    Musicmom80

    Answer by Musicmom80 at 10:10 AM on Apr. 8, 2011

  • ok i'm on postive story i niver had it but let me see what i can find :)

    At 12 weeks our baby was diagnosed with a cystic hygroma. It was 9 mm and septated. The doctors gave me the gloom and doom speech and I was devastated. We did the test I think it was the CVS and the results were normal chromosomes and that we were having a baby girl. After months of more tests including a fetal scho, monthly ultra sounds, and NST's for the last two months of the pregnancy we have our baby. On June 28th our beautiful baby girl was born 7lbs 7oz. She is perfect and I just wanted to share to let others know that if you hope and pray even when they tell you the worse the best is still possible. You are all in my thoughts and prayers. Take Care!
    feralkitten

    Answer by feralkitten at 11:28 AM on Apr. 8, 2011

  • My first baby was diagnosed with a cystic hygroma at 12 weeks. Higher level ultrasounds showed that fluid was also around the baby's belly. It was a devastating experience. I, like you, was unable to find much positive information at all. We attempted to have an amnio at 16 weeks, but the membrane was not attached, another indicator of genetic problems. We were able to do an amnio several weeks later. I prayed and prayed for downs syndrome or turner's syndrome. As strange as it sounds those sounded better than some of the more devastating genetic disorders. We were shocked when the results came back as normal. The hygroma was still present though. The longer the hygroma stays the worse the prognosis gets. I really thought that there was no hope. However, amazingly by22 weeks the hygroma disappeared. My daughter was born healthy and normal. The only indication that anything had been wrong was the presence of som
    feralkitten

    Answer by feralkitten at 11:29 AM on Apr. 8, 2011

  • Our cystic hygroma story so far...

    At 12 wks my baby was diagnosed with cystic hygroma measuring 8.2mm. They were convinced my baby had edwards and off we went for cvs testing followed by cardiac scans which all came back negative.

    After months of tears and prayers, my daughter was born on 13/12/10, she is slightly small compared to my other babies (almost 3lbs lighter) but she is strong and healthy. She has a bit of extra skin on her neck from the cystic hygroma which is barely noticable. We are hoping she wont need any treatment for this although we have to monitor it in case it should grow.

    We feel so incredibally lucky to have her here with us after all we went through
    feralkitten

    Answer by feralkitten at 11:31 AM on Apr. 8, 2011


  • Cystic Hygroma is a rare Lymphatic Malformation that may be diagnosed in utero through ultrasound. Approximately 80% of Cystic Hygroma are in the neck region showing up in ultrasound as a large fluid filled sack. It is sometimes associated with Hydrops and chromosomal disorders like Noonan's Syndrome, Turner's Syndrome, Edward's Syndrome and Down Syndrome. Because of this the number one recommendations from doctors who diagnose Cystic Hygroma in utero is termination of the pregnancy. Parents who receive this diagnosis are often given alarming statistical information and told most of these children will die before they are born. They are told those who do live through birth will most likely pass shortly after birth. There is very little research on this condition and not enough, in my opinion, to support this recommendation.
    I am an adult living with this condition for 37 year who does NOT have a chromosomal disorder. I was
    feralkitten

    Answer by feralkitten at 11:33 AM on Apr. 8, 2011

  • i hope theses storys help
    feralkitten

    Answer by feralkitten at 11:34 AM on Apr. 8, 2011

  • Have you seen the perinatologist yet? If so, there should be a geneticist on staff that you can call and talk to. They will have up-to-date and accurrate statistics about the condition for you.

    When we had something pop up, I was so freaked out! Then, I spoke with the geneticist, and she was able to take some of the fear and guesswork out of it all.

    Just a suggestion.

    Hugs. I hope everything works out.
    ImaginationMama

    Answer by ImaginationMama at 11:46 AM on Apr. 8, 2011

  • hey honey my baby has it too and they told me that it could happen and shes had it since ive been 9 weeks pregnant with her it hasnt gone away nor has it gotten worse good luck
    devlynsmommy08

    Answer by devlynsmommy08 at 2:43 PM on Apr. 8, 2011

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