Cystic Hygroma (large NT@12 weeks)--not a good scan--Updated :)

I was sixteen when my mum had my youngest sister. I remember my mum coming back from her 12 week scan, crying her eyes out because the doctors had found what they thought to be the same condition you mention during her routine appointment. My dad had not been with her at the appointment. My mum at this stage was classed an 'older mother' and so the doctors feared the worst. They offered an amnio or ending the pregnancy. My parents discussed the matter, and as they are quite religious, they decided to ignore medical recommendations and just press ahead with the pregnancy. My dad's first reaction when my mum told him the news was 'we will just deal with whatever God gives us - this child is a blessing'. My mum was relieved that he felt that way because it had been her gut instinct too. They would not even consider amnio because of the risk of miscarriage (i think the risk was 1 in 10 in those days and it was too great a risk for them to consider taking). I remember being unsure at the time whether this was the wisest move, but my parents were resolute and stuck to their instinct. They told the doctors that they did not want any further testing done. The doctors were very sceptical of my parent's choice.

My mum went in a few weeks later (i forget how long, perhaps a fortnight) for further scanning, and the mass had disappeared. The doctors were cautiously optimistic, but we all worried for the remainder of the pregnancy, preparing ourselves for the worst. In the end my little sister was born perfectly healthy. Apparently, the first words out of my mum's mouth when she delivered her was 'can you check that she is healthy'. It was something that had understandably stressed her for the entire pregnancy. Our little blessing is now a bright teenager, doing well with her GCSEs. The best thing that could ever have happened to our family. We love her to bits and she is the glue that keeps us together. I look back and feel bad that I doubted my parents resolve to press ahead without further testing, but still couldn't say for sure whether I would have made the same decision if I were in the same shoes.

Anyway, I hope this gives you a ray of hope. I wish you the best - I know how stressed you must be having witnessed my parents go through the same dilemma all those years ago. Lots of love. xx
 
That is a beautiful sign Gigglebox! I believe your baby is going to be just fine.
 
You keep getting these signs- the gender info, the little boy, and now the paper... there HAS to be a reason for all of this... hang in there, sweetie!
 
Thank you everyone :hugs: I truly hope you are all correct and this baby will be a true miracle baby!

Bumpbear--thank you SO much for the story. It's things like that which keep my spirit high.
 
Its definitely a story which ends well. I know its hard, but dont give up hope when there is still some left to be had. I really do pray this works out positively for you. x
 
My last baby had a cystic hygroma. The cystic hygroma itself is not life threatening, but it is associated with some serious chromosomal disorders including Turner Syndrome, Down Syndrome, and a few others. Turner's is usually the case as it was with mine. I hate to share bad news, but if it IS Turner's, Edward's, or Patau's, the baby does not have a very good chance of survival. If it's Down's, the baby has a much better chance. It IS possible that the baby does NOT have a chromosomal disorder. It's rare, but it does happen. If so, it can be treated, but it can be a life long battle. It's not a tumor that can just be removed. It is a lymphatic disorder. When this happened to us (last year), I searched high and low for information and support. There isn't much out there. I created a support group on Facebook titled Cystic Hygroma. Please check it out. There is a ton of resources on there. Also - check out BeNotAfraid.net for support and success stories. They gave me hope when I needed it most. Even though we ultimately lost our baby girl, I am happy that we continued the pregnancy. I don't regret that decision at all. The ladies on the BeNotAfraid site got me through some really tough times.
 
Luckily Gigglebox's CVS came back normal so the baby doesn't have any chromosomal abnormaility.
 
Excellent news!!! Like I said before, the cystic hygroma itself is not that big of a deal. Now that you know the CVS came back with no chromosomal issues, you can focus on the different treatments for the CH. There are various methods, the most common being the use of some type of sclerosing agent. There are lots of success stories using OK-432. It is not FDA approved in the US, but you can get access to it through participating in a research program. There are other methods too. Check out this page and feel free to ask questions. There are tons of moms who have gone through it and can give you information. There are some videos and photos too.

https://www.facebook.com/#!/topic.php?uid=119196188124310&topic=90

Lastly, the hygroma may go away before the baby is born. It's been known to happen. Basically, the baby's lymphatic system was delayed in these cases, and they finally develop before birth.

Important! When researching for info. on the internet, try using the term "lymphatic malformation" rather than cystic hygroma, and you might find more information. LM is the current term whereas CH is the old term.
 
thanks for the link sunbaby :hugs:

Just to clarify, the baby tested negative for chromosomal defects (though this was the FISH results; my genetic counselor assures me that it is unlikely the final result will find anything different but I will get those late this week.

Also, someone previously asked about hydrops--the baby has NOT been diagnosed with hydrops.

Hope everyone is doing well! one day at a time...

And by the way, congratulations to all the new moms-to-be! I just noticed how many of you are new in the first trimester! Good job ;)
 
I hope you are correct! Hopefully the hygroma will shrink and all will be well. In the meantime that facebook link was broken...
 
Sorry about the FB link. Try this:

https://www.facebook.com/cystic.hygroma

When you go to the page, click on Discussions and then select the topic about doctors, treatments, and research studies. (There are other good topics too.)

If the CH doesn't go away before birth, look into the EXIT procedure of delivery. It can be life saving if the baby's airway is blocked by the hygroma. Here is a link with some info.:

https://www.childrensmemorial.org/depts/fetalhealth/fetal-exit-proceedure.aspx

I'm hoping it will go away on its own! :)
 
Update: I just got my full results back from the CVS and all is well and normal!!! no choromsomal defects for my bun! yay!

Next hurdle will be the u/s on wednesday (week from today)...please, PLEASE show that NT shrinking!!!
 
I just read your whole thread... what a stressful situation to have to go through. That story about the little boy who chased your car really does sound like an angel trying to tell you everything will be ok :) I'm so happy for you to hear the full results were good news! I have my ultrasound next week too. This will be my very first. Fingers crossed for the both of us that we both get to see a happy healthy bun in the oven!
 
I just read your whole thread... what a stressful situation to have to go through. That story about the little boy who chased your car really does sound like an angel trying to tell you everything will be ok :) I'm so happy for you to hear the full results were good news! I have my ultrasound next week too. This will be my very first. Fingers crossed for the both of us that we both get to see a happy healthy bun in the oven!

Congratulations on your first pregnancy! Welcome to the happiest and most stressful 9 months of your life, lol! Hope your scan goes great (as I'm sure it will :hugs:)
 
Update: I just got my full results back from the CVS and all is well and normal!!! no choromsomal defects for my bun! yay!

Next hurdle will be the u/s on wednesday (week from today)...please, PLEASE show that NT shrinking!!!

best news I have heard all day and hopefully a good sign for things to come. I have everything crossed for your little family. x
 
Thanks everyone!!! I also just found a study on a .gov site regarding increased NT with normal chromosomes, and it sounds positive, provided I make it past the 20 week ultrasound :D here's what the conclusion was: "CONCLUSION:

After exclusion of chromosomal anomalies, one out of five fetuses with increased NT has an adverse pregnancy outcome. The chance of an uneventful pregnancy outcome depends on the initial degree of increase in NT. However, if the detailed ultrasound examination at around 20 weeks is normal, a favorable outcome can be expected with confidence, irrespective of initially increased NT."

The full study is here: https://www.ncbi.nlm.nih.gov/pubmed/17559183

The study does mention the increase of adverse outcome is more with the increased size of the NT, but it doesn't specify what is "large" or "small". I'm OK with that though; still gives me help! Also they include women who have terminated their pregnancy as an "adverse outcome" so they are included in that category...

Now I am kind of saddened by the amount of women who may have ended their pregnancy when it could have been OK :(
 
Update: I just got my full results back from the CVS and all is well and normal!!! no choromsomal defects for my bun! yay!

Next hurdle will be the u/s on wednesday (week from today)...please, PLEASE show that NT shrinking!!!

Fantastic news hun :flower: Here's to the next week flying by and seeing some progress!!! x
 
Oh sweetie I am so hopeful that this is going to work out fine for everyone! I am also saddened that if the CVS comes back normal that 4/5 pregnancies go on to be normal why they would tell people like they told you that you should end it! What if you had already put a D and C in motion and then you got the CVS results back like you did and realized there was nothing wrong chromosomally? Holy crap, I really think this is an answer from some higher power for you- maybe after all this you could help other women with a similar problem.
 

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