Help - my baby has a cystic hygroma - advice needed!!

[Weez]

My baby has had a lump on her side, under her arm, since she was very young. I noticed it when she was about six weeks old, took her to the Dr, who referred her to the hospital. She has since seen a paediatrician, who sent her for a number of scans, then referred me to the surgical paediatrician who said that it is a cystic hygroma, apparently a very rare cyst, which normally forms on the neck and grows as the child grows (or a lot faster). Luckily my little girl, who is now 7 1/2 months and is crawling everywhere and pulling onto her feet at every opportunity, doesn't seem to be bothered by it and the cyst is in a place where it is not noticible when she has clothes on, although it is growing at the rate that she is. Anyway to cut a long story short we have two treatment options, the first being to get the cyst removed under general anasthetic in three weeks time or when she is one or for Isla to go to glasgow (around 3 1/2 hours away) for a series of injections of a substance called OK-242 which is not yet licenced in this country (presumably due to the cost). We just dont know what do do, there is no guarantee that the cyst will go away with the injections and there is no guarantee that with the operation (which will leave a scar which will get bigger as Isla grows) the cyst will not return. Basically it is not melignant or anything sinister like that but is more the look of it which is the problem, especially as it gets bigger.

Has anyone come across this before or know anyone who knows anything about it? I have been told that most GP's will not come across this in 40 years of practice and there is not a great deal about it on the net. What do people think they would do? I am leaning towards the operation as although I worry about her going under a general anasthetic when she is so small, it would be over in a day - but she would be left with a scar which she wouldnt get if she got the injection.

Decisions, decisions!!!

 

[mamichuli]

Oh hunni, what a bugger of a situation to be in. I think I would probably go for the injections in your case. Seems to me that if they dont work you could always go for the operation at a later date? Whatever you decide, have some of these - you need them

Lisa

 

[DebbieM]

That is a tough one. With her not being my child, I would say to go for the op and get it over and done with BUT, I can only say that because it isn't my baby that we are talking about... if you know what I mean. It's easier for me to say go for it since I don't have to watch her go through the anaesthetic etc. Poor little thing.

I guess you could perhaps make a pro's and con's list and see which is more favorable? In the long run, if it is something that will be noticeable when she is older, then I would definitely have it removed. A pro of having it done now is that she is less likely to touch the area after the op etc than she would at the age of 3.

I hope whatever you decide, it goes well, which I am sure it will.