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Cystic hygroma

(54 Posts)
BeyondHope Mon 18-Dec-17 18:25:32

Today we had our screening scan at 13+4 and were told that our baby has a large (5.3mm) amount of fluid stretching from the base of his head to pretty much his tailbone. I can't make sense of it. After 5 miscarriages I stupidly thought I was out of the woods. The sonographer told us that as the fluid runs further than just the neck fold it's more likely to not have Down's syndrome but another anomoly such as Turners, Edwards etc.

I am booked in to have a CVS tomorrow afternoon and a more detailed scan with a consultant.

Has anyone has this before? Positive and not so positive outcomes? Google is telling me that most babies with this problem will die before birth and to be honest I am petrified.

Thank you everyone.

offbeatgirl Mon 18-Dec-17 20:22:43

Yes I had this in my first pregnancy, and the CVS revealed it was turner's syndrome. Our scan identified hydrops too - build up of fluid around the baby's organs, and when that progressed I had a tfmr because there was very little chance of survival to birth. The are other possible causes of a hygroma I believe such as a heart defect with no underlying chromosomal condition, or infection, which have different prognoses, and indeed turner's without the hydrops also has a better prognosis. I hope you get some answers soon, and fingers crossed for a positive outcome. How awful to have to face this after your miscarriagesflowers. Arc (antenatal results and choices charity) may be helpful when you get more information.

BeyondHope Mon 18-Dec-17 21:22:06

Thank you for sharing and I'm sorry you have had to go through this. Can I ask how many weeks you were when you made the decision to have a tfmr? The baby looked amazing today. Rolling around and playing with its hands. I can't imagine having to end it all. sad

YouLookRadiantCousin Mon 18-Dec-17 21:59:22

My DS was diagnosed with a 4.2mm cystic hygroma at my 12 week scan. I had an amniocentesis, which came back clear, and extra scans, but I was still terrified that I was going to lose my baby or that he was going to be really unwell. But the cystic hygroma disappeared at some point between my 16 week and 20 week scan, and my DS is nearly 3 now and perfectly healthy - touch wood. (I only say touch wood because I still can't believe my luck really and I'm scared of jinxing it!)

I really really hope you get a happy outcome too. My heart goes out to you and offbeatgirl and anyone else who has gone through/is going through similar flowers

NotSoSkinnyNow Mon 18-Dec-17 22:18:48

DS1 had a cystic hygroma. It was spotted at the first scan (8 weeks). At the time, I was abroad where termination was not an option. I spent the whole pregnancy having blood tests every fortnight and scans every 3-4 weeks, and basically living in the fear. They tried to do an amniocentesis but due to the position of the placenta, it couldn't be done. I don't think cvs was even available where I was at the time.
Over time, the hygroma reduced in size, or rather, it didn't grow with DS. He is now a bouncy, happy 10 year old. He has some food allergies and eczema, and seems to suffer with colds more often than most in winter, but apart from that he is as fit as a fiddle.

Fingers crossed for a good outcome for you op.

BeyondHope Tue 19-Dec-17 06:04:26

Thank you both for messages about your lovely DS's. I am so glad everything worked out for you. It's truely a nightmare. I can't function. I just have to pray that this hydroma also disappears.

NotSoSkinnyNow Tue 19-Dec-17 08:45:33

Thinking of you this morning OP. I really feel for you. The stress and worry is horrendous, along with knowing that you have no control over the outcome. Be kind to yourself, breathe and know that you are not alone. flowersbrewflowers

offbeatgirl Tue 19-Dec-17 09:10:41

I'm glad you've had some more positive responses OP. The hygroma was picked up at 11 weeks and I terminated just before 16 weeks when it was clear the baby would not survive to term. I never regret waiting until the prognosis was really clear, as I would have been delighted if my baby with turner's had survived. It was just one of those things, and I went on to have 2 healthy children. Best of luck with your scan this afternoon flowers

BeyondHope Tue 19-Dec-17 09:35:59

Thank you. I just hope I get he CVS results this week. I can't bare to face Christmas not knowing. This was our last shot. After 5 miscarriages it was a huge decision to try again. sad

NotSoSkinnyNow Tue 19-Dec-17 13:10:03

Offbeatgirl flowers and congrats on your 2 healthy children

BeyondHope, I am thinking of you this afternoon. It is indeed an awful time. Don't be afraid to cancel your Christmas plans if you need to. I cancelled my wedding at the time (it would have taken place in the week that the results were due had they been able to test). I have never regretted it. I too could not function or think straight at the time. Be gentle on yourself flowers

YouLookRadiantCousin Tue 19-Dec-17 19:22:32

Hope everything went smoothly today OP. I have been thinking about you. I won't say I hope you're ok because of course you're not. I was far from ok. It was the hardest time of my life - honestly if you can get through this, you can get through anything. I agree with NotSoSkinnyNow, cancel whatever you need to, try to look after yourself as well as possible and just do whatever you need to do to get through it. My fingers will be crossed for you.

BeyondHope Tue 19-Dec-17 20:00:00

Thank you everyone. I had the scan and the consultant couldn't tell me anymore then the CVS which was quite painful. She said hopefully results Thursday avo or if not definitely Friday morning.

I can't stop crying. I felt strangely calm after the CVS and now I'm really not doing too good. I need to keep Christmas plans going for my little boy. We have grandparents and other family coming Christmas Day and I don't want to tell them and ruin their Christmas too.

I don't feel like I have anyone to talk to. I don't know anyone who has experienced this and I just feel really alone. Sharing on here helps so thanks everyone for your kind words and thinking of me.

NotBurpeesAgain Tue 19-Dec-17 20:59:55

Hello BeyondHope. On December 6th I learnt that DC4 had an 11mm hygroma and fluid in its abdomen. I chose to refuse CVS because I did not want to risk a miscarriage for Christmas. Now I have to wait until January 8th to have a scan. The doctors were very vague about the prognosis so of course I did some research and sadly the question seems to be when, not if I will miscarry. It is a relief in a way because I feel uncomfortable about termination.
I wonder if my baby is still alive all the time.
I hope you get your CVS results soon.

BeyondHope Thu 21-Dec-17 16:30:15

Hi everyone. This morning I received the news that my little baby has Edwards syndrome and will not live. I have barely stopped crying since. I am booked in for delivery next week after Christmas. I could have chosen this weekend but I didn't want to have Christmas Day straight after.

I don't know what it's going to be like and I'm scared. I had emergency section with my DS and had no contractions. And now my first experience of labour will be giving birth to a baby that won't survive. I'm just exhausted.

NotBurpeesAgain Thu 21-Dec-17 19:06:19

I am so sorry BeyondHope. I know there are no words. flowers

offbeatgirl Thu 21-Dec-17 19:46:44

OP, I'm so sorry. Hospitals offer all manner of pain relief in these circumstances. I would take what is offered. My hospital also offered funeral options. I'm sorry, this is the last thing you want to think about, but just so you're prepared and it's not a shock. I saw someone from the clinical psychology team afterwards and found it helpful. It might be worth seeing there's any support like that? It must be particularly awful to be facing this after recurrent miscarriages flowers

Noburpees, I will be thinking of you over Christmas. I can understand why you'd want to leave it to fate, but also how hard this must be flowers

Singerleon Thu 21-Dec-17 19:59:47

So sorry beyondhope flowers

I’ve only just seen your post but my first miscarriage the baby had a 11mm cystic hygroma and hydrops. We had scans until the heart stopped at nearly 14 weeks. I didn’t have further testing but Turners or Edwards was suspected.

Thinking of you x

BeyondHope Thu 21-Dec-17 20:46:05

Thank you everyone. And I'm sorry for those who have gone through this. It's just unimaginable. Can I ask, do the hospital arrange for a funeral/service or is that down to us?

YouLookRadiantCousin Thu 21-Dec-17 21:48:17

I'm so sorry BeyondHope, that is devastating news. It's so unfair. And to be facing this after 5 miscarriages is just unimaginable. I know there's nothing I can say which will help at all but I will be thinking of you and your lovely little baby for a long time. I hope you can find the strength to get through this and that you have lots of loving people supporting you in real life sadflowers

YouLookRadiantCousin Thu 21-Dec-17 21:51:50

NotBurpeesAgain, I'm so sorry to read about what you're going through. Sending love and strength to you and OP flowers

offbeatgirl Fri 22-Dec-17 16:05:15

BeyondHope, our hospital offered several different free funeral options, and we selected one so we didn't have to do anything except show up. We also chose to see our baby after the delivery, which I think helped me.

Take care.

BeyondHope Fri 22-Dec-17 17:13:33

Thanks offbeat. My mind is thinking a thousand scenarios as I have no idea what to expect. I will be delivering about the same time as your baby was. Were you able to get hand and footprints?

offbeatgirl Fri 22-Dec-17 18:22:51

No, my baby was too small for prints. My only regret is that I didn't hold or touch her - she seemed too small and vulnerable to do so at the time. I'm sorry that you're having to think about all of this x

BeyondHope Fri 22-Dec-17 19:10:12

I'm so grateful for your advice offbeat and sorry you have also had to go through this. I have no one else to ask. sad

Tedster77 Fri 22-Dec-17 19:17:18

Oh bless you - I’ve worked with families suffering similar loses through my job and supported my best friend through a very similar situation due to Edwards Syndrome.

My heart is breaking for you - life can be so so cruel.

I hope your hospital had a good bereavement team - the journey is so hard and the littlest things can make the biggest difference. You are not alone and please keep talking when you need to x

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