Cystic Hygroma
I’ve decided to write and post about our experience with a diagnosis of a cystic hygroma on my baby at 10 weeks.
I was told that it could be too early to tell if anything wrong, and they gave me a 70% chance at this point she would be ok. I was devastated. I was referred to the fetal medical unit in Newcastle RVI, within 6 days I was back getting another scan. They said before I went in for the scan it still could be too early but they would scan me anyways. They redated her at 11weeks by her measurement and confirmed the cystic hygroma 5.7mm. I was offered a CVS test there and then, so within an hour or so I was back in the scan room getting the needle inserted through my tummy. I didn’t find it painful, maybe a little scratchy feeling for a few very brief moments, but nothing to be afraid of. I was fully aware of the risks of miscarriage. It was done within 5 mins. Later that day it felt only very slightly crampy and I just took a couple of paracetamols and the pain gone. So my partner and I waited, we took a couple of days off work and we went to Durham catherdral and asked a clergy man to pray for us. We came home that afternoon and telephoned the hospital and they told us the results for Turners, Downs, Edwards and another one I can remember was clear! Fantastic news….. I forgot until later and called the hospital back and was told we were having a girl! This was a big relief. So we were to wait for the rest of the results within 2 weeks. I noticed on my notes it said I was to be scanned locally to check for hydrops at 14 weeks which would have gone without being arranged if I hadn’t seen this on the notes and had to contact my local hospital to arrange. In the mean time I had to telephone the RVI as the rest of CVS test results took more than 2 weeks to come through, but thankfully was told that was clear also. 14 week scan came and she was scanned and no hydrops! I asked the sonographer about the cycstic hygroma and she gave me a measurement of 2.7mm, also said there was a nasal bone. So from what I have learned from my own research on the net it was all good! My partner asked the sonographer what she thought generally is it looking good? And she just wouldn’t answer him! She just said you’ll have to wait and see until the heart scan….. I really just got the impression she didn’t want to say. It seams to me the hospital staff are scared to say anything like that. So we were happy though and felt much more confident about our prognosis. I have just been for the details heart scan (ECHO) today and the consultant literally did the heart scan only, ( we didn’t get to see the baby as side view like u would normally) but good news again! He said quite often he asks to see people again at 20weeks to check again because at 16 it is too early to see clearly, but he said she has a normal heart ‘fantastic’ he said and was no need to see us again!!!
A lot of prayer was done, yoga, distance reiki, tried to eat as healthy as I could and drink plenty of fluids. Every one of my friends and family knew so I know there was a lot of positive vibes being sent through from them also…..
So there was no meeting in that little room to discuss out positive prognosis which would have been helpful but I assume we must be in the normal pregnancy status now. I wanted to post my experience to help others going through similar situations, I feel when I was told about this I wasn’t given enough information or given a balanced and realistic outlook. I feel medical staff have a lot of fear around this and when we were sitting talking about this there was no encouragement to focus on what could be a positive outcome….. where I found my reassurance was on the internet from others posting there experience.
So hang in there, there’s a good chance things might be alright!! Sending you my best wishes….xxxxx