Pregnancy & Birth Clubs <
27/03/2014 at 13:13
hello ladies. as some of you may know i had a scan today as I've had continuous bleeding for six weeks.....
baby is alive but has his stomach and abdominal organs outside of his body. we don't know yet if it's just his bowel/intestines or everything like liver, kidneys, stomach intestines etc as he is still small. also he has a huge sack of fluid going from his head to his bottom completely enveloping his spine and neck all of the way round. there's been a flurry of doctor's and an urgent referral made to a specialist in liverpool where I'll need to go possibly as soon as tomorrow for another more detailed scan to confirm it's abnormalities. it is called cystic hygroma and omphalocele they said it is also possible it has turners syndrome. they have mentioned down syndrome and possible heart problems as baby has cysts in his neck and throat and could suffer heart f failure due to suffocation. there's been a partial abruption of the placenta which is what's causing the bleeding and bleed wa very visible on the scan. he is measuring ten weeks and five days and his heartbeat is strong he was waving and his tiny legs were moving but i KNEW as soon as he popped on the screen he didnt look right there wa a huge black shadow right down his back and i just broke down. she said "it's alive but there's problems) ive seen a specialist screening midwife and been given books on chromosomal abnormalities and amniosentisis and god knows what else. my mind is blown right now and im scared to death, has anybody else had a baby with this?? what happened please help me xxxxx
27/03/2014 at 13:22
Oh my goodness!! My heart sank when i read this!! I am SO sorry to hear you are going through this!!.
I have no experience with this myself but didnt wanna read & run. I guess it will depend on what results come from more detailed scan s but I know a lot of those things do not mean its the end... Children with turners & downs can live happy lives... & i know my friend who is a NICU nurse has seen babies who are born with their organs outside their body & have been successfully treated.
do you have enough people around you to support you? Ugh! Wish I could do more for you x x
27/03/2014 at 13:31
27/03/2014 at 13:34
27/03/2014 at 13:36
hi hun, thanks. liverpool fetal medicine unit have just rang and said I'm to go down on Tuesday morning for another scan and they should be able to tell me more. we dont know the extent of the abdominal protrusion yet, it MIGHT just be his intestines but they wouldn't say what it would mean if it were all of the organs developing on the outside. i can't believe this is happening, they said despite all of it's problems the baby is clearly a fighter and his hb was strong, i just feel stunned just completely stunned. i keep crying then going into a state of disbelief and almost denial. they gave me a picture and it doesn't look like my other scans at this stage, i keep examining it stupidly looking for...i don't even know what tbh. xxxx
27/03/2014 at 13:43
27/03/2014 at 13:46
hi samantha, there was a LOT a didn't take in tbh and all these "names" and conditions are new to me. they said asnthere is cysts in it's neck it could suffer heart failure due to suffocation if they extend to the front aswell as all around the back of it's neck. the docotr and specialist screening midwife said the fetal medicine unit will be brutally honest with you and tell you EXACTLY what all of this means but I'll have lots of tests and scans etc and thourough examinations of baby before they'll give a definite diagnosis. its nuchal fold is extremely enlarged and the swelling spreads right down its spine. it was about a centimetre above the spine and went from top to bottom like a black cloud. the liverpool hospital should also be able to see exactly what organs are outside of it's body as they have the best equipment. I'm just still trying to take it all in. my dh's uncle and his wife had to terminate at 25 weeks due to their baby having turners syndrome so i know the prognosis isn't looking good. especially with the abdominal abnormalities aswell, i just want to help my baby and the thought of it suffering is crippling me i am trying to focus on just waiting til Tuesday's diagnosis but it's so much to take in I'm just shaking, i feel like I'm dreaming xxxxx
27/03/2014 at 13:53
hey samantha, i keep posting and overlapping your posts, sorry. dh is kind of the same as me really. in shock, he's done some googling and had a cry a few times but he's more scared I'll have to go to Liverpool by myself as there's only me and him and he will have to be here for the kids. i keep watching the clock and telling myself "don't fall apart you've got the kids finishing school in an hour" i feel like a bloody stiff brandy wouldn't go amiss right now lol. i keep shaking and panicking then going cold and numb and practical. i suppose it's just shock if the abnormalities were just his intestines then i could DEAL with that, its the cysts in his neck and fluid on his head and spine added to that that i know will mean the odds are stacked against his survival. i thought i was ready to say goodbye but not like this,i had prepared myself for a missed misscarriage, not this. xxxxx
27/03/2014 at 14:02
Im so sorry to read this and i dont know what else to say other than sorry, i was reading this artical yesterday there is a lot to think about and for now i would just try to stay calm and relax, im sure it will drag till your next scan and it cant be easy.
i wish there was more i could do to help xx
27/03/2014 at 14:05
hi sarah, than you for your message today, i didn't have time to get credit but i did try to text you bak hunni. thankyou i will have a look at the link now hun. xxxxx
27/03/2014 at 14:18
hi sarah, ivewjust read the article and some of the baby's conditions sound so similato what the doctors said to us. I've been given some websites to look at but the staff at glan clwyd basically said this is way over their heads and liverpool are the ones to deal with thia which im glad of tbf as they have hardly been great so far and if they can't deal with normal everyday situations in a proper way they sure as hell wont be able to deal with this. i know my baby is a fighter but i need to know he wont suffer. i couldn't watch him suffer heart failure and suffocate cos of these cysts. I've never even heard of cystic hygroma but i fully intend to researcher it now. all they told me at glan clwyd was that it's severity varies greatly so i HAVE to have some hope. xxxxx
27/03/2014 at 14:24
My dear friend,
You have to keep hope for him, he has put up such a big fight so far its clear he is strong, i understand you dont want him to suffer and im sure they will now do every thing in there power to look after you and bubba, but also take time to take every thing in huni, dont be pushed or make any rash choices, Remember we are all here for you and will offer all our support to you.
Dont worry about not getting credit huni that should of been the last thing on your mind really!
Did they say he is still the right size for now? i thought that artical might help and maybe a long shot but might be worth getting intouch with her and seeing if she can offer you a bit more info and support? xxxx
27/03/2014 at 14:37
Sad to read your post as I hoped it would all be ok. I cant offer much advice but I would say, try to stay strong and gather all the facts you can before making any decision.
best wishes xxx
27/03/2014 at 15:05
hi, I just had a sudden rush of relief .. gosh your baby is a fighter. my sister has turners though she has mosiac turners so its not the full blown condition we dont really know what it effect it has on her she doesnt have any symptoms.
turners presents with alot of genetic abnormalities, baby can have some or all. heart defects are common, extra skin around neck, thickening of the neck also common, stunted growth, bowel problems. to be honnest the scan may look horrendous but until theyve looked at it properly and done some genetic testing via amnio its best not to freak out. there are hundreds of possibilities but until they can tell you properly theres no point freaking out. alot of conditions are operable so wait to you hear from the proffesionals who know what theyre talking about. that baby is such a fighter.
27/03/2014 at 15:27
thankyou sarah and piper. they did mention possible heart defects piper, amongst other things. i will get a proper diagnosis on tuesday at liverpool but I'm doing as much research as i can. baby is measuring 10+5 (I'm 11+1 today by lmp) so seems to be growing as he should and they said his hb seemed strong. she did that thing where they look at the heart with all the different colours showing blood flow but didn't say what she found. im sure i will know more on tuesday but I'm trying to remain positive. if it were just the cystic hygroma i could face it better but coupled with the omphalocele it makes it even more daunting. I'm not sad or scared for me,I'm scared and sad for my baby. is it in pain?? is it suffering now?? how much will it suffer after birth if we get that far??? they've already spoken about the amnio and given me loads of booklets and leaflets on it and on chromosomal abnormality testing. it'll be at 16 weeks the amnio and she said they may want to take some of the placenta for testing too. my immediate reaction to that and the amnio were and are "not a frikkin CHANCE" cos of the risks but i need to not make those decisions yet til I've had time for it all to sink in and to make an informed decision. i absolutely can NOT consider abortion i just can't though dh has decided that if that's the only option its already a done deal as niether of us can bear the thought of watching our baby suffer terribly only to lose it's battle after an agonising life. i don't know, allsorts is going through my mind right now and i just have to try and take it one day at a time i suppose. xxxxx
27/03/2014 at 15:29
piper i hope you don't mind me asking questions hunni but does your sister have any symptoms at all??? physical or otherwise?? xxxx
27/03/2014 at 15:32
my little fighter. he is facing down, lying on his tummy sort of all curled up in a ball. the sonographer tried to get a nice pic without the stomach and spinal problems being too obvious which i thought was nice of her. you can see his little ear and mouth and face. he measures 10+5 xxxxxxx
27/03/2014 at 15:42
I honestly don't know what to say but I am soooo sorry about the scan and news you've had best thing to do (and I know it's very hard) is try not googling stuff and don't think too much into it until you have been to the specialist hospital and they have told you EXACTLY what is wrong as you may be worrying about all the wrong things.
As other's have said your baby is clearly a fighter and I am sure they will advise you on what is the best option for you and the baby. I am sure they would not let your baby suffer and would be honest with you if that would be the case. I have also seen on programmes where babies have had operations to put their bowels etc back in to their tummy's. I know that's not the only thing you have to consider but hopefully you will have a clearer understanding on Tuesday.
Good luck with it all. Sending you lots of love xxx
27/03/2014 at 16:06
Such a clear little pic of little man (i say little man i just call all babies boys lol)
It was nice of her to get a pic for you, so your not far out on your dates which is a good sign that he is growing at the right pace, the girls are right huni, try not to put too much worry on your self or bubba until you know all the facts on tuesday.
try and just go with the flow for now huni we are all here rooting for you and little one xx
27/03/2014 at 16:44
Stay strong hun keep us posted. Sending hugs x
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