cysts and edwards syndrome...chromal disorder experience?!

[Mummy Rich]

Hey there.

I had my scan on Friday. Baby seemed marvellous - everything growing in proportion, kicks and waves all good.

Then the scanner lady stopped on a pic of the babbas brain and said hmmm...right.

Well my heart dropped and she went on to tell me not to worry and explained somethin little as she put it. A fluid filled cyst on the babiesd brain which is a marker for Edwards Syndrome.

We had to go c a specialist there and then - which put a bit of a damper on the experience. He explained that although this cyst will go there's a small chance its a marker for edwards syndromw - like downs but worse as he put it. As these cysts deffo vanish he cant re-scan in a few weeks to c if theyre still there but it gives 1 in 500 chance of the baby having this chromosomal disorder. My triple tests results come back 1 in approx 5000 so im very low risk for that.

But because they'd all said we have to tell you this just to tell you it i stayed quite positive... still he started talking about an aminsitos (sp!?!?) so i stopped him and said i wouldnt terminate regardless so he said that was our answer.

I have also contracted parvo virus b whilst pregnant (slapped cheek) so i was like oookkk

So he wants me to c the specialist in 4 weeks time... i dont know why though. I am a little worried as if they cant c the cyst in 4 weeks whats the point of another specialist appointment.

Just threw me off. Sorry for the long post....just needed to get it off my chest and chat. OH is being lovely telling me not to worry and all is fine so felt a bit yano... repeating my worries...xxxx

 

[jemz24]

i wouldnt wish this experience on anyone but unfortunatly i have been there.
I went for test after test scan after scan and visited loads of consultants, again i was offered the amnio but like u i refused.
Ive just been given the all clear for anything serious.
But as im not aware of wot they saw i cant give u complete peace of mind. Just be aware that a lot of girls get told about the risk of chromosal disorders and it turned out the baby was healthy.
Your odds are really good as i was given 1 in 25 chance. U will know eventually through extra scans wots goin on. I hope u all the best hun and hope its good news for you im sure it is

 

[Jaidy]

Wishing you all the very best hun, I hope all turns out to be ok, which im sure it will.

Stay positive as a 1 in 500 risk is very low. I have heard of this happening before and then the cysts disappearing. Not nice to go through though, im dreading having my scan in case they find something, such a worrying time isnt it. Glad everything else is all ok, that is reassuring.

Take care

 

[scones]

Aw hun Im so sorry you have had this experience, sometimes scans are bittersweet arent they. In a way its lovely to see baby but to then be told there might be probs can ruin the whole pregnancy, usually for nothing as baby is very oftern healthy! Here are a couple of examples for you

One mate of mine was told all the way through preg that her baby was ill, too small, etc etc.Her girl was born fine and healthy, it was my mate that was ill as her gall bladder was then removed!

Another older friend who has a teenager didnt have any scans with him (they didnt do them then) found out when her 7 was 7 yrs old that he only had one kidney! This would have normally been picked up on a scan and she would have worried sick and probably not let him have a 'normal' toddlerhood.

I know its easy for me to say dont worry because you will worry.Im worrying as Im 20 wks and not really feeling movement.

Have a google about the slapped cheek syndrome/preg women as I work with kids and I know that if a child comes in with it I have to tell my midwife.

Lots of love xxxxx

 

[*sara*]

Aww there have been a few posts lately that there has been cysts or fluid on babies head, hopefully the girls that this happened to will reply and be able to give you some advice. My risks for downs came back as 1:223 so your chances sound good.

 

[JayK2387]

Hey hun,

My baby had these Cyroid plexus cysts, she had one either side of her brain measuring 6.8mm and 7.2mm. Was told they were rather large.

I had the amnio and everything... baby was absolutlely fine.

Had a scan at 24 weeks and they had gone.

Look it up on google.. seems many of us have been here and it is all part of a normal growth, try not to worry too much hun altho i know its hard not to.

Am happy to give you my number if you wanna chat about it... just send us a pm xxxx

 

[lillyblue]

awwhhh my heart goes out to you!! I hope your ok but like the ladies said 1 in 5000 is still a low risk!!!

xxxxx

 

[meandthebump]

Hoping that everything works out for you and your baby. Like the other girls have said, it will probably turn out to be nothing. A worrying time for you though.

 

[LittleMe]

I'm so sorry I've only just been able to get onto the Internet for almost a week!

I'm sure everything is going to be fine, and like the others say, it's still low risk. Try not to worry hun

 

[Squiglet]

My sister had Edwards and sadly died from it. What I will say is that if your baby is normal size and active, then its very unlikely to be Edwards. The babies are very small for their gestation... they aren't very active and often rarely make it through pregnancy. My mum never had the tests done as they weren't available 30 years ago but she knew something was wrong, and even on the poor quality scans it was obvious the baby was small.

Also they generally have quite poor hearts from day one. Its like they were put together in a rush and they got it all wrong...Its obvious from the scans. Edwards is such a severe handicap, all babies die from it eventually. But if yours LO is fine other than these cysts, its highly unlikely to Edwards. The cysts might be a marker, but they need to be in conjunction with other problems really to be Edwards.

Try not to worry... a good size, healthy active baby is what you've got and that is an excellent sign.

 

[Mummy Rich]

Thank you so much for all your replies.

I know I am over worrying but just cant help it. I know it's highly unlikely but I wish they'd never told me any of what they did. If it's so unlikely why bother worrying me??

Again...thank you girlies! xxx

 

[chezzabell]

hope everything works out for u hun

 

[jemz24]

Thank you so much for all your replies.

I know I am over worrying but just cant help it. I know it's highly unlikely but I wish they'd never told me any of what they did. If it's so unlikely why bother worrying me??

Again...thank you girlies! xxx

i felt exactly the same i wish id never had the downs test in the first place, and i have asked that question, i guess the answer to that is doctors do have to disclose everything that they find, think etc. But i knew deep down there was nothing wrong with my baby but i still worried, but i finally got my peace of mind and soon u will too hun

 

[Kelly G]

awwww hun, ive only just seen this.

I dont know what to say aparyt rom i hope evrything turns out ok for you

Loving ur choice of baby names btw

 

[Tracey S]

Hi Hun,

Sadly I have had experience of Edwards Syndrome, my daughter was diagnosed with it last year when I was 23 weeks pregnant.

My Triple test results came back at 1 in 231 for downs which was considered high risk, we decided at that time not to have the amnio as the baby was much wanted and we had 2 miscarriages, we figured that the miscarriage rate was more of a risk. We carried onto the 20 weeks scan which is where the first indication of a problem was found. The sonographer couldnt see fluid in the baby's stomach, we were told to come back a week later and not to worry. The same thing happened the next week and then they also found the cysts in her head. It was obvious then that something was wrong, we were offered another amnio which we took, and sadly even though Heidi didnt have Downs, she had Edwards, and we sadly came to the decision to end the pregnancy and let her go, as Squiglet has said the condition is so bad that the baby always dies, the phrase they used was 'incompatible with life'. They basically said that if Heidi had made it to the end of the pregnancy she would have lived minutes or hours at the most. We couldnt do that to her, the last thing we wanted was for her to suffer.

The fact that you have only been given one marker is a good sign, when I was researching the cysts I read that they are very common in pregnancy and only cause concern when there are other markers, like in my case there was the stomach problem, and the baby was small for dates. I think there are other markers too, the heads are strawberry shaped and the hands are clenched and the fingers deformed.

I cant tell you what to do, but when they say its like Downs but worse that doesnt really describe Edwards, its a hopeless condition where there is only going to be one outcome, we HAD to know what we were likely to be facing, but while I thought about Downs I didnt even consider that the baby may have Edwards. I hope you dont mind me telling you all this and I hope I havent scared you, but you have asked for experiences and this was mine

I really hope that everything will be ok for you and your little one, if you want to ask me anything about Edwards then feel free to ask or send me a pm.

Tracey xx