cystic hygroma in pregnancy User Group
My perspective - CH/LM during pregnancy
About This Group:

This group is for womem who are pregnant and have been told that their baby has a cystic hygroma. Share your story, show support for others and discuss your concerns.

Founded by Jodee2010 on January 16, 2011
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My perspective - CH/LM during pregnancy

I think when people are given the diagnosis of CH or LM in early pregnancy it instills a massive amount of fear.
What does this mean for my unborn child?? It is certainly a confusing time.

By all means treatment may be available postnatally for remaining LM's. However I believe having been through this situation what people want to know at this point is where to from here. More often than not the malformation has resolved by between16- 22 weeks in utero. The fact remains it is a proven indicator that something MAY be wrong whether chromasomally, heart defects or genetic sydromes (the three leading associated abnormalities) regardless of whether the CH has resolved. It is important at this stage in the pregnancy to primarily address these issues and I believe that is why people are looking here for information - "Cystic Hygroma in pregnancy".  I have been contacted by numerous people on various websites all around the world and they are all searching for the same answers.

LM is the "correct" and modern day terminology and likely mostly referred to as this in the US however the contact I have had from people all over the world is that their doctors refer to them still as CH's during the pregnancy and that is most commonly what people are searching for when trying to go onto the next stage of understanding.

The Head Professor of Genetics for South Australia in counselling me during my recent pregnancy provided me with much valuable information in "assessing" my situation. Most often he referred to the "FASTER" study provided in the link below.

http://onlinelibrary.wiley.com/doi/10.1002/uog.4044/pdf  

. . . This seems by far one of the better research papers (of the many) around at this point in time. For me especially given once my CVS came back all clear and heart scan looked great - it was well what on earth happens now? At what point am I most likely to know whether this could turn out "ok"?? What are my chances of a good outcome?? In all honesty a remnant LM was way down my list - personally I was more concerned about mental disabilities etc

One of the biggest issues I faced during my pregnancy was understanding the sequence of events that would follow the original diagnosis. For me. . . I then had a CVS,numerous ultrasounds, infection screening, an Amnio to follow up on infection screening, 2 specialist fetal echo's, more ultrasounds including medical 3D imagery, and genetic counselling. It was an incredibly stressful time in my life. However all this testing enabled me to rule out the most common associated problems.

I understand that with my situation - 12 weeks 8.4mm Septated Cystic Hygroma - I was on the severe end of the scale and I indeed count myself extremely lucky to have such a magnificent and healthy baby boy. He has zero health issues and at 5 months has grown into the small amount of excess skin present at his birth. Whilst the fluid in his neck was largely resolved at 22 weeks there were small remnants of fluid - 2 pockets right up until his birth at 37 weeks. In my situation with a reading so high - most either terminate their pregnancies or the baby dies in-utero. Given this fact there is little documented research on the outcome of pregnancies in my measurement category. However for smaller measurements the news is much more promising. With normal chromosomes, fetal echo (18-20weeks)  and "normal" ultrasound at 22weeks - your chances of a good outcome are the same as those without an enlarged NT. Up to 98%!

For me it was very important to remain realistic about the prospective outcome. I indeed count myself as very lucky to be where I am today.

For anyone that finds their way here and wishes to share their experience I would be happy to listen! I check back from time to time - Inbox me if you wish. It is a daunting, stressful and lonely time in your pregnancy - I am very non-judgemental. When being told the news by my OB she opened with "Now I dont want you to think that all hope is lost but we have real and grave concerns for your baby". I was forever grateful for those words - I had hope but I knew I had to take the concerns seriously. To me they were wise words that then enabled me to go ahead and assess my situation from my own perspective.

If by chance you find your way here - you are NOT alone!!
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I figure I may as well share my experience. I was born a week early, but was considered a very healthy baby girl. My parents took me home and were excited to have a girl in the family after having my two older brothers. After a couple months, they noticed some swelling and redness on my right hip and thigh and took me to the pediatrician. He said that he thought it was Lymphangioma(old term), but wasn't sure. He then referred us to a pediatric surgeon who confirmed the diagnosis and said to keep an eye on it for then to make sure there wasn't any significant growth. At around 7 months I became very sick with pneumonia and was taken in for surgery because of the extreme swelling. That was the first surgery I had, and the next one was at the age of two. This surgery was the biggest surgery I had and they tried to remove all of the malformation, though it is extremely hard to do(lymph fluid is clear and many times the malformation is intertwined with healthy tissue). They got most of it, but some was left over. I then had yearly surgeries to keep it under control up until the age of 6.

I went to school and did everything normally. Played sports, hung out with friends, etc. Though at the age of 13 I had another surgery, but the seven year break was nice. At the age of 16 I decided to have the one "last" clean up surgery. It went well and I stayed overnight in the hospital for pain management. But a year later I began to have pain around that area. It was the first time I had pain from it and it progressively got worse. I was on pain medication for months searching and trying to find someone to do something about it. I finally found a surgeon who would help and had a somewhat major surgery in March of 2008 to 'fix' the problem. Since then I have been pain free, so, so far so good.

I'm now a pre-med student at a local university and am still very active in sports and other activities. I am happily engaged and have a amazing, supportive fiance. Having a lymphatic malformation really isn't all that bad. I don't have experience with how it is with having a child with this, but I experience this in my day to day life as the patient. I have thoroughly researched all I can about this condition since I had my surgery when I was 16. I have talked to and kept in contact with a few world-renowned surgeons(Dr. Waner, Dr. Reinisch, Dr. Fisher, etc) who are the pioneers in treating this condition and knowing all they can about it. I enjoy helping others understand the condition and finding correct treatment for it. The condition is a fluke occurrence and no one knows the exact cause of it. I'm just one of the lucky ones to get it. It's usually not associated with a genetic abnormality, but it can be. People tend to freak out when they get this diagnosis because there is so much incorrect information floating around and it just saddens me. I wish more doctors were up to date on this condition and had the correct information instead of guessing or going off of old information. I've done a lot to bring awareness about Lymphatic Malformations and will continue to do so.

So that's my story. If any one has any questions, please feel free to ask.      
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