# How the world can change...update pg 10 - we say goodbye to our precious angel



## collie_crazy

We went for our 12 week scan yesterday with not a worry in the world. We never dreamed that anything bad would happen and where very happy and excited to be seeing our baby again ( we had an early private scan at 8+4). Oh how wrong where we. 

Everything during the scan seemed to be going fine - we seen baby moving, and waving its arms and kicking its legs and our EDD was moved forward from the 3rd Jan to the 1st Jan... we were smiley happy people until the sonographer uttered horrible words of 'I have concerns for your babys development'. I now feel like our whole world has been turned upside down. Everyone who was happy and excited is now anxious, upset and scared. 

They said the nuchal translucancy was abnormal and apparently this is a marker for a few genetic disorders the main ones being downs syndrome and turners syndrome. We spoke to a consultant and they were pretty doom and gloom, apparently 70% of babies will have one or the other of these syndromes with only 30% being 'normal' - it can also be the marker for severe heart problems but babies heart is too small to check for abnormalities - it was beating away like mad though. 

We have another scan with the consultant on Tuesday, which feels like years away and will be having the CVS test then too. 

To say I am scared doesnt even begin to describe what I'm feeling. I feel like I'm in the middle of a nightmare and keep hoping I will wake up soon. 

I wish Tuesday would hurry up - I dont know what I should be thinking or feeling or doing right now. I've started to show but I'm too scared to even think about my baby right now :cry:

Sorry for offloading on you guys. I dont know if I should be posting here or not but I didnt feel comfortable posting in 1st tri.


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## pcake

So sorry ur going through this. I assume the nt measurement was above what they considered 'normal', or was there another issue? Do you know what ur measurement was??

My SIL had a high nt measurement with her dd. They had the CVS test and everything was actually fine.


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## collie_crazy

They never actual told us what our NT measurement was but did say it was abnormal. They didnt bother to take bloods, which I see other people have had done. 

I'm only 24, 25 in 2 months, and my OH 27 so the doctors seemed quite shocked with the results considering our ages.


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## pcake

Yes its called conbined screening. So u have an age related risk number , then they use the nt measurement and ur blood results to give u an overall risk number, i think its anything under 1 in 150 is considered high risk,anything over is low risk. Just going on my SILs experience, a high nt measurement doesnt automatically mean downs, although im not sure if it was just that ur measurement was high, or if they were looking at other markers too (presence of nasal bone, for example). Good luck hun, this must be a very difficult time for u and ur family. I know the time will drag till tues. Just remember, like i said, my sILs 2nd daughter had an 'abnormal' nt measurement. They were taken into a room and told there were concerns for the babies development. They, like you, had to go through an awful waiting process, but everything was fine. Really hope this is the case for u and ur LO. Pls update on tues xx


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## beccad

:hugs: 30% is still a pretty high figure hun, so one in three won't have any problems.


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## lizziedripping

Sorry darlin', unfortunately I do know what this feeling is like :( Our daughter started to deliver unexpectedly at 23wks, and I felt as though I had been plunged into my own private hell! It is a shock, and you never honestly expect it to happen to you. 

That said, you do not know for certain yet that your baby has anything wrong. I have heard so many women in your position who go on to have healthy babies, so please try not to assume the worst hun. 

As for this terrible feeling of despair that you are going through until you know more, it is horrible, and there is nothing I can say to take it away, but I do know you will come out the other side a stronger person for it - in the meantime, you are in my thoughts and prayers, and I do hope things turn out ok for you xxx


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## NashiPear

Of course you are upset after your scan. I too, look forward to all my scans and seeing my baby and the thought that something could be wrong is my worst nightmare. Two and a half weeks ago I started to leak amniotic fluid. It was a terrifying time for me and the doctors said that there was nothing they could do and that my baby was not viable (I was 22 weeks). I cried and felt heartbroken, but decided to stay strong and positive as much as I could. I was lucky to still have plenty of fluid (many don't) and there was a healthy little man kicking away in there that I wasn't willing to give up on. While I am now termed "high risk" I am 24 + 3 days and my baby is considered viable now and they are talking about what they can do to save him if he is born early. I have a funny feeling he doesn't plan on going anywhere for a while. 

This is a horrible time for you and you have a lot to take in, but stay positive and find the positive outcomes. I heard 70% of women went into labour within the week, but my mum kept saying to me "someone has to be in the 30%, why not you?". It is not over by a long shot so stray strong. Hopefully your positive outcome just has a few bumps in the road.


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## Kasia

:hugs:


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## pcake

NashiPear said:


> Of course you are upset after your scan. I too, look forward to all my scans and seeing my baby and the thought that something could be wrong is my worst nightmare. Two and a half weeks ago I started to leak amniotic fluid. It was a terrifying time for me and the doctors said that there was nothing they could do and that my baby was not viable (I was 22 weeks). I cried and felt heartbroken, but decided to stay strong and positive as much as I could. I was lucky to still have plenty of fluid (many don't) and there was a healthy little man kicking away in there that I wasn't willing to give up on. While I am now termed "high risk" I am 24 + 3 days and my baby is considered viable now and they are talking about what they can do to save him if he is born early. I have a funny feeling he doesn't plan on going anywhere for a while.
> 
> This is a horrible time for you and you have a lot to take in, but stay positive and find the positive outcomes. I heard 70% of women went into labour within the week, but my mum kept saying to me "someone has to be in the 30%, why not you?". It is not over by a long shot so stray strong. Hopefully your positive outcome just has a few bumps in the road.

That is an amazing story and just goes to show the doctors aren't always right. It sounds like ur little man is super strong and so comfy inside you that he's not planning on going anywhere for a while! Good luck x


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## daydreaming22

Im sorry you are having to go through this :hugs:. I think your doctors figures are way off though. With your age and an abnormal NT scan it puts your risk at about 1:250....if he or she was right about the 70% your odds would be more like 1:3, which they would never give without blood test to go with it. Please try to stay positive, I know its hard. Many women go on to have perfectly healthy babies after abnormal NT scans.


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## JaydensMommy1

I work in a ob office as a nurse and cannot tell you how many times I have seen women go through this with really positive outcomes. The NT scan is simply a marker and has no definite conclusion with just this screen. Were you at a 12 week reg scan? Or the scan checking for deformities? The reason that I ask is if it was just a regular scan he/she should have suggested a more detailed u/s. The nt is just not exclusive enough to rule a verdict. My first born had a marker too, cysts in his brain.. They ultimately went away and he is a perfectly happy energetic 2 year old. Markers are just flags not conclusions. Did they offer blood work? From there an amnio will be suggested if bloodwork is bad, and this is the only definite answer. I've seen women with 1/4 chNce of downs and baby was find. I've even seen a baby with a 6mm NT result turn out to be a healthy baby boy. 

Good luck hun


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## mafiamom

first off, i was in your situation and the prognosis was absolutely dire. my babe had a 1:3 chance of having trisomy 18 after a scan and blood work. had an amnio and there is absolutely nothing wrong with baby..... so remeber, these are just SCREENS - not definites.

secondly, i can imagine the shock you were in so you weren't able to get all the necessary information. you need to call back and get the NT number, find out if there were other soft markers and ask if a nasal bone was present. i would also ask why blood wasnt taken. the scan is supposed to go hand in hand with the blood work. one without the other just isnt accurate.

be your own advocate here. they should have been more specific with you. call them back and get the answers you need.

HUGS and gl.


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## collie_crazy

Thank you everyone.

It was just a regular 12 week scan, our hospital doesn't offer the NT scan yet. On my letter it says they offer blood tests instead however at the end of my scan the sonographer took measurements and said she had concerns for babies development - a cconsultant then came in and took over the US and looked at the measurements and it was her that said about the 70% thing. I am really annoyed at myself for not asking more questions but we were in such shock I couldn't think straight at the time. I have a lost of questions for our appointment tomorrow though where we are booked for another scan and CVS test if we choose to do this, which I think we are. They did take blood from me but it was only 2 small vials and she said it was to check my blood type because I couldn't remember and she said if I was rhesus negative I would need an injection prior to the CVS.

The more I read the more I question her 70% figure, I just don't understand where this comes from? 

I guess we can only have the tests and await the results with everything firmly crossed!


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## NashiPear

I am glad you are feeling hopeful. Good luck with everything and don't beat yourself up about not asking enough questions. It can be quite a shock to be given bad news and it is a lot to take in.... I do think the questions come later as you are processing. It certainly did for me. 

Try to write your questions down too. I find it helps to keep me on track because the doctors are doing their checks and have their agendas, but they aren't mind readers and we need to not only take in the new information they give us, but also check over the list in case we forget a question or find something has not been answered. I found it really helped as it is so easy to get distracted in the meeting as you discuss different issues. 

Best wishes!


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## kosh

Glad you&#8217;re feeling less anxious. Do not blame yourself for not asking more questions at the time, you can do so now so have processed the information. 

I do not understand why the hospital says they do not do the NT scan, when in fact they did? Maybe they do not do the combined screening (NT+bloods) as such? If you preferred to have that one done before going ahead with a CVS, you could always try and go private (I know that BUPA does them). 

About the 70% figure, it&#8217;s difficult to know without knowing your NT value, but what I imagine is that it must have been on the higher end of the range. NT values vary quite a lot both for normal and Down cases, and they do overlap, that&#8217;s why the results can be so misleading. I had a CVS done last week, so let me know if you want any details. 

Good luck tomorrow :hugs:


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## JaydensMommy1

Good luck Hun!! Keep us posted. I don't know where she got the 70% from by just one measurement.


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## Fuchsia1412

Any update, are you okay?


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## pcake

How did it go?? Iv kept everything xd for u today xx


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## collie_crazy

Well the cvs has been done. I was poked and prodded for 2 and a half hours today and had to empty and refill my bladder a few times to get the uterus and placenta in the correct position. In the end the consultant had to do the cvs procedure twice as the first time they could not get enough tissue for the test. The first time it was just uncomfortable with a lot of pressure the 2nd time really hurt and I now have quite bad cramp pains. 

I asked for the measurement at the last scan and she said it was 11mm which sounds pretty dire if a 'normal' measurement is under 3mm.

I went in today feeling quite positive and left the complete opposite. I feel like there is no hope :(


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## pcake

Oh hun i dont know what to say. Yes, that is a very high nt measurement, iv got to be honest. My sil had what they considered a very high nt measurement, and her LO was just fine, though i dont know how high it actually was, going to text and ask for you. It sounds like u have had an awful day, it must have been very scary,painful and stressful. Have they given u counselling as well? So when will u get the results? xx


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## kosh

i'm really sorry the cvs was so stressful. please look after yourself. 
when will you get the results? 
:hugs:


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## collie_crazy

I can't believe this is happening! The hospital just phoned. The lab have got back to them saying there is not enough tissue to complete the testing and they want to redo the cvs for the THIRD time tomorrow morning. 

I was expecting to hear the preliminary results tomorrow not to go through this again :(


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## chichestermum

o hun! im so sorry you have to be going through all this! keep your spirits up hun! good luck for tomorrow! were all thinking of you xx


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## kosh

omg! again?! :nope: is all this because of the position of your placenta? because that happened to me and the doc said it was best to wait a week and see if the placenta would change position so they could get better access to it. 
how many weeks are you? because if you are not happy with having the procedure done again so soon, you might want to consider asking them to wait till you can have an amnio instead? 
:hugs:


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## collie_crazy

I am 13+1 according to my first early scan and my ovulation date (I was using OPKs) but baby is measuring 13+3 according to last weeks scan. 

I dont think it is to do with the position of my placenta. The first time she did it no problem with where my placenta was - however they got no tissue at all and had to do it again. By this time I thought my bladder was about to burst so they let me empty it a little but then my uterus moved and it became difficult at that point to get to the placenta so they got me to drink more fluids again and wait for my bladder to fill. When I went back into the US 30 mins later my placenta was back in its 'easy to reach' position and she tried for the 2nd time. This time she managed to get tissue but apparently it was not enough! 

I dont know what to do. She said they were keen to book me in asap and has given me an appointment for tomorrow morning at 10:30 but with a different consultant as she wont be there. But I am scared to go through it all again as I think it is obviously increasing risks of miscarriage / infection etc with the repeated upset to the placenta. 

UGH! I am so frustrated! I cant believe this is happening. We were hoping for results tomorrow not another test!!!


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## Parkep

O sweetie :hugs: I am so so sorry you are having to go thru this!


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## kosh

yes, i read that sometimes the amount of sample is not enough for the test and they have to take another one, but three? i can totally understand your frustration!! how are you feeling now? do you still have cramps? 
could you ask the screening midwife or this other consultant whether repeating the procedure so soon might have an effect? 
i know that it's difficult but try to stay calm
:hugs:


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## kosh

did you get the cvs done again? 
how are you feeling? :hugs: :hugs:


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## happyface82

I'm so sorry you are going through this and even more sorry that they are making it so difficult for you! :hugs:

I hope the different consultant was better and gave you no more pain at least! Fingers crossed for good results! :hugs:


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## mafiamom

oh no. i am so sorry you have to go thru that again. i hope this time all went smoothly. personally, i think they should try to rush the results (can they do that???). you have been thru so much already...

hugs and kup.


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## collie_crazy

My baby girl has Turners syndrome and according to the consultant has a 5% chance of making it to birth.


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## happyface82

Oh hun I am so sorry. . . . . . :hugs: :hugs: :hugs: :hugs: :hugs:


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## kosh

oh nooooo! :nope:
i'm so so sorry :hugs: :hugs:


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## JaydensMommy1

Oh wow.. I am so very sorry.. :hugs:


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## evasmum

I am so very sorry :hugs:


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## pcake

Oh i am so very sorry. I cant imagine what you and your partner are going through. You are probably already aware but there is the Turner Syndrome Support Society https://www.tss.org.uk/ Also, know there are lots of people following this thread who are all here for you should you want to talk or anything. Thinking of you xx


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## JaydensMommy1

I know a little girl in my clinic with t.s. And she is a lovely girl and a joy to be around


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## chichestermum

so sorry to hear this hun. :hugs:


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## Kiki09

I'm so sorry you are going through this, sending :hugs:


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## marshalynne

I am so sorry... sending along :hugs: your way.


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## aaaaa

I am so sorry. Sending lots of thoughts and prayers your way. :hugs:


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## Nyn

I've just read through your story and I'm so sorry hun I can only begin to imagine the stress you are going through :hugs: :hugs: :hugs:


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## sweetcheeks78

My prayers are with you x


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## collie_crazy

Sorry I forgot to update this the other day. My head is a mess! 

Well we've been to see the consultant obstetrician and she was a bit more positive that Fridays She said the odds weren't good but she wouldnt put them as low as 5%. She left it up to us to decide what we wanted to do and said they would support us either way. 

After speaking with her, a wonderful nurse, a consultant who introduced himself as a 'baby doctor' - I think he might hvae been a neonatal pediatrician and also the geneticist (!!!) we have decided to leave the decision making up to our little girl. If she is strong enough to make it then who are we to stand in her way. I know the chances of her making it are still low but I dont think I could live with the 'what if's' if we chose to do the unmentionable at this stage. Its going to be a long and hard 26 weeks of worry though, just hoping she will be strong enough to make it. 

I am feeling a lot more positive today. Not sure why, perhaps it was talking to all the doctors at the hospital. But I've been feeling that our little one is trying hard to make it - we fell pregnant about a week after coming off birth control, had a positive pregnancy test just 6 days after ovulation so very early and she is still here and fighting after not one, but three invasive CVS tests and a whole lot of stress! Also the consultant didn't take a measurement of the fluid surronding her but did say that it didn't look as bad as the first scan so *fingers crossed* the cystic hygroma will go away on its own. 

Now we just need to sit tight and wait. I will be seen regularly by the consultants and they are planning on doing a detailed heart scan at 22 weeks once the heart is big enough to check for any problems as there is a high correlation between Turner syndrome and heart defects. 

So we would appreciate as many good thoughts as you can manage! I think we will need them.


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## Andypanda6570

Sending many prayers and many wonderful thoughts. xoxoxoxo :hugs::hugs::hugs::hugs::hugs:


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## aaaaa

Best wishes to you hun :hugs: What a wonderful mother you already are to this little girl. My prayers are with you and her.


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## Scarletvixen

Hope everything works out fine for you all, but if baby does have something wrong with them remember that most children with downs and other conditions go on to live happy lives xxx


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## Neversaynever

Just wanted to send you some positivity and strength :hugs:

Lots of love and thoughts :flower:

XxX


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## lauandbump

Sending you and your daughter a massive hug and all my best wishes. I pray she will be strong and fight just as you are doing for her now. Take care, you are in my thoughts xxx


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## Misstink

Just wanted to say have Faith, have Courage and have Hope and stay strong, your little one sounds like a little fighter just like her mammy!!
xxxxxxxxxxx


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## BabyBoyle

Collie - 

Please please please feel free to PM me or search for my previous threads.. 

I found out in January that my little girl had Turners.. 

Unfortunately she didnt make it, ***BUT*** there are so many women and girls with TS that lead perfectly normal healthy lives and are so beautiful..

Turner Syndrome Support Group have been AMAZING for me, they have group meetings and a huge support group, of people with children with TS, and also themselves..

It feels like your world is crumbling, but stay strong for your little girl, she will fight, you watch!! They are proper fighters.. My little angel fought as long as she could!

Again, PLEASE PLEASE PLEASE PM me if you need to talk.. 

Sending love, hugs and prayers your way xxxxxxxxxxxxxxxxxxxxxxxxxx


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## pcake

Good thoughts,good thoughts, good thoughts... honestly sending as many as i can ur way. Ur little girl sounds like a fighter and im so glad ur feeling more positive. It still must be very scary, but we are all rooting for you and her xx


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## Mauser

NashiPear said:


> Of course you are upset after your scan. I too, look forward to all my scans and seeing my baby and the thought that something could be wrong is my worst nightmare. Two and a half weeks ago I started to leak amniotic fluid. It was a terrifying time for me and the doctors said that there was nothing they could do and that my baby was not viable (I was 22 weeks). I cried and felt heartbroken, but decided to stay strong and positive as much as I could. I was lucky to still have plenty of fluid (many don't) and there was a healthy little man kicking away in there that I wasn't willing to give up on. While I am now termed "high risk" I am 24 + 3 days and my baby is considered viable now and they are talking about what they can do to save him if he is born early. I have a funny feeling he doesn't plan on going anywhere for a while.

Hey NashiPear, (I'm sorry to threadjack)... keep up the good work. My water broke- totally ruptured- at 17w5d. I ended up carrying my son another 6 weeks. Athough I didn't have a happy ending, :nope: I know quite a few women who have. Probably our worst foes were the high risk doctors we saw who gave us the "It would take a miracle" speech. Don't listen to the gloom and doom- they are full of crap- take everything with a grain of salt.


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## mafiamom

many many positive thoughts, prayers and hugs coming your way. fight baby girl!!!

please kup....


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## gingerwhinger

My heart goes out to you, you sound like a very strong lady though :) I am sure your daughter will be as strong too x


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## xxxleeleexxx

hey sweet, i just wanted to send u a big hug xxx
and tell u that my little neice has turners syndrome aswell.. she is now a happy and heathy 3 and half year old! she had to have an op on her heart at 2 days old which went perfectly well an opperation on her skull at 18 months but she recoverd very quickly and developed normally, walking at 18 months and so on now speaking full sentences and is potty trained. try and think posativly and hopfully everything will be ok xxx


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## nadinek

lots of good thoughts to you and your little girl. xxx


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## JaydensMommy1

Any update?


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## collie_crazy

Not much of an update really. 

We seen the midwife for the first time last week and also spoke with our consultant obs again. They have booked another scan for Thursday after having a meeting with the other doctors who will be involved in our care - neonatal peadatrician etc and they want to keep a close eye on the fluid surronding baby. I am hoping and praying that we will get some good news and the fluid will have either gone down or at the very least stayed the same I so hope that it has not gotten worse for our little girl :( 

We are 16 weeks today :) Every day feels like a milestone.


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## JaydensMommy1

:hugs: hang in there Hun- praying for you all.


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## babybearsmama

:hugs:


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## Neversaynever

Belated happy 16 weeks :hugs:

Hope you get some good news at the scan on Thursday. 

Positivity and strength coming your way :hugs:

XxX


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## tummymummy

:hugs::hugs::hugs: hope everything goes well xx


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## MintChocChip

Thinking of you and your little girl :hugs:


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## fifideluxe

you are truly an inspiration, your little girl is lucky to have you as her mother xxx


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## collie_crazy

Thank you all for your kind words :hugs: 

I am having a bad day today :( Just keep bursting into tears and feel so scared - I just wish I could do something to make sure she will be OK. How can you love someone so much when you havent even met them yet :cry:

I think it is probably because I have another scan on Thursday and I am so scared that something will be wrong. I just want my baby girl to be ok :( And my work colleague / friend is also pregnant and has just announced it to other people - I am happy and excited for her of course but a part of me keeps thinking that its so unfair - I wish I could have a normal pregnancy. I wish I could enjoy my pregnancy and get excited about my little girl but I just feel like I cant plan anything, I have no control over anything, I cant get excited or be happy about her coming because those horrible odds keep going round and round in my head... 95% chance of miscarriage how can she beat those odds? 

Sorry for the emotional rant guys.


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## jojo23

keep positive hun!! i lost my little girl at 22 weeks doctors said it was just bad luck!! i knew at 20 weeks that my fluid was very low but had to wait 2 weeks to see if anything had changed, it was the longest 2 weeks of my life and i nearly cracked up so i can only imagine what you have to go through... i really hope you get a happy ending hun. i wish your little girl all the luck and love in the world!

Your little girl has fought her way to get to this far and she'll keep fighting. keep as positive as you can hun(easier said than done) and we are all sending love and prayers and good wishes your way xxxxxxxxxxxxxxxxxx


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## Neversaynever

Collie...sending you massive :hugs: honey

I really hope you get some good news on Thurdsay :hugs:

XxX


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## JaydensMommy1

Miracles happen every day.. They do. I know when things seen hopeless it's easy to feel defeated or to give up but try to keep your chin up. There are different severities and like I said I see a little girl monthly in our clinic with turners and she is a beautiful little joy
:hugs:


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## collie_crazy

jojo23 said:


> keep positive hun!! i lost my little girl at 22 weeks doctors said it was just bad luck!! i knew at 20 weeks that my fluid was very low but had to wait 2 weeks to see if anything had changed, it was the longest 2 weeks of my life and i nearly cracked up so i can only imagine what you have to go through... i really hope you get a happy ending hun. i wish your little girl all the luck and love in the world!
> 
> Your little girl has fought her way to get to this far and she'll keep fighting. keep as positive as you can hun(easier said than done) and we are all sending love and prayers and good wishes your way xxxxxxxxxxxxxxxxxx

I am so sorry for your loss :( :hugs:


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## collie_crazy

I think it is coming to the time when we need to say goodbye to our little girl :(

Our scan did not give us good news. Her cystic hygroma had gone from 11mm to over 40mm, there is now fluid all over her little body, in between her skin and in her lungs which is known as Hydrops - the consultants basically said this means she is in heart failure. She is also measuring small for her gestation and they think this might be due to the pressure the build up of fluid is creating. 

They do not give her any hope of making it to birth and even if she does she may not survive outside of the womb because of the fluid. 

The scan was horrible. I could see for myself just how bad it had got and it was so painful looking at her :(

Now we have been left to make a decision - unfortunately I think at this stage there is only one choice to make.


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## Neversaynever

Collie... I am so sorry :hugs:

I know nothing that I or anyone will say will comfort you, but please know that I am thinking of you, your DH and your little girl.

I'm sorry you had to see her that way too and you're very brave coming back and updating.

Please take care of yourself.

XxX


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## Mauser

Collie, I'm so very sorry that all this is happening to you. I wish I had something to say that would make it all better and take away the hurt. 

Sending you much love and gentle hugs.


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## Nyn

I'm so very sorry hun, sending you strength and hugs :hugs:


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## JaydensMommy1

I'm so truly sorry for the painful decision you must make. You did the right thing by waiting and I am so sorry for the emotional turmoil you must be in. I wish the very best for you and your family. Please, update us soon. You will be in my prayers. :hugs:


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## lauandbump

I am so sorry to read this update, i am crying for you and your LO. I send you lots of strength and hugs, just wish there was something i could say to make it better for you. You are an amazing lady and your LO is so lucky to have you hun. Take care xxxx


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## candy808

collie_crazy said:


> I think it is coming to the time when we need to say goodbye to our little girl :(
> 
> Our scan did not give us good news. Her cystic hygroma had gone from 11mm to over 40mm, there is now fluid all over her little body, in between her skin and in her lungs which is known as Hydrops - the consultants basically said this means she is in heart failure. She is also measuring small for her gestation and they think this might be due to the pressure the build up of fluid is creating.
> 
> They do not give her any hope of making it to birth and even if she does she may not survive outside of the womb because of the fluid.
> 
> The scan was horrible. I could see for myself just how bad it had got and it was so painful looking at her :(
> 
> Now we have been left to make a decision - unfortunately I think at this stage there is only one choice to make.

I am so sorry. I will keep you and your family in my thoughts and prayers:cry:


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## collie_crazy

Our beautiful baby girl was delivered on Sunday at only 17 weeks. She was oh so perfect :cry: We named her Emily.

I'm sorry its all to raw to tell her story now but hopefully in the coming days I will be able to share it with you. 

Miss her so badly :cry:


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## JaydensMommy1

Oh sweetie- my heart breaks for you.. You are so strong.. Whenever you're ready to share Ill be here if you need someone. Fly with the Angels Emily. 
:hugs: :hugs: :hugs: :hugs:


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## michelle25

oh i am so sorry. prayers for you and your family


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## Neversaynever

Sat here crying :cry: I am so sorry for the your loss of your beautiful daughter Emily. May she rest in peace with the other angels. :hugs:

Please be kind to yourself and your DH, take all the time you need and :hugs:

So sorry :hugs:

XxX


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## Mauser

I'm so sorry, Collie. Before I lost my Brendan, I had no idea that my heart could hurt so much, that I could be ripped by such sorrow and grief.

Sending you much love and remembering your sweet angel Emily.


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## collie_crazy

Thank you all :hug: 

We have spent the afternoon arranging her funeral - it all feels a bit surreal. At first I thought I wanted her in the shared baby garden but once I had made the arrangements with the funeral home over the phone I really freaked out about it all and I ended up going there and arranging for her to have a private plot, which meant we got to choose a lot more to do with the burial. 

I think its helping me in some small way to accept what has happened and say goodbye and it means we will always have that special place to go as we didn't get to meet her and make our own special memories :cry: Some people might think that its a bit much having a funeral for a baby who was only 17 weeks... but to me she was a real person. We seen her and held her, we fought with her and prayed with her to fight on and when she couldn't fight any longer we looked at her beautifully perfect little baby face and said goodbye with her. So she is getting a proper send off.


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## JaydensMommy1

You have every right to have a funeral. There are a few women I've met from the middle east who had a funeral for a nine week baby. A life is a life and it's extremely precious. At least you have a place you can go see her and connect with her. She is lucky to have such a wonderful beautiful mommy like you. You are in my thoughts and prayers as always. I wish the very very best for you and your family during these hard times.


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## evasmum

I am so sorry... I too know how quickly the world can change.

Sending you love and strength for the days and weeks ahead :hugs:


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## lauandbump

Oh darling i am so so sorry for your loss, i can't believe this. My heart is breaking for you. Your beautiful girl deserves a funeral and of course its not too much. I wish you all the strength in the world, just wish i could say something that would help. RIP little Emily xxxxx


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## Locksley27

I am so sorry for the loss of your little girl, but glad that you have a place to visit her. :hugs:


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## Neversaynever

No one thinks it's silly for you to have a funeral for your daughter, she may have been 17 weeks but she was and still is your daughter. You carried her, loved her, bonded with her and had hopes and dreams for her. She's a lucky girl having a lovely mommy like you :hugs:

Still in my thoughts :flower: :hugs:

XxX


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## mum2beagain

so sorry for your loss xx


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## ashley2pink

:hugs:


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## collie_crazy

For anyone that is interested Emilys full story is here - https://www.babyandbump.com/ethical-prenatal-losses/689017-emilys-story-turner-syndrome-cystic-hygroma-v-long-just-want-get-out.html - it has details of her delivery and I'm just about to update on her funeral :hugs:


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## Neversaynever

Collie...hope you're holding up as well as you can :hugs:

Most of us are not allowed to read posts from that section but I am thinking of you and how difficult it must have been to go through it all. Big hugs to you and Emily too :angel:

xxX


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## collie_crazy

Sorry I forgot it was a request forum. I'll copy it here x

For those that have been following our story you will be able to skip at least half of this very long post as it is Emilys whole story :hugs:

We said goodbye to our little girl a week ago today. Her funeral is tomorrow and I think its time I shared her story here. 

What a rollercoaster the last 5 months has been. My partner and I had always spoke about having children but the time never seemed right. Then one night a random conversation started about babies and suddenly we were talking about trying to conceive. We had always wanted to wait until the time was 'right' but that conversation made us realise that there probably would never be a 'right' time. We have been together over 7 years (now nearly 8), had just bought our first home together, both had good paying jobs that allowed us to lead a nice life - OK they arent in the professions we ultimately seen ourselves in but they paid the bills etc. So we decided to begin to try. I started taking prenatal vitamins straight away, went to the doctor for a check-up and visited the family planning clinic to have my contraceptive coil removed. We were ready to go! 

It seemed like my body wanted a baby as much as my heart now did because within 2 weeks of having the coil removed we had conceived! I didn't even have time to have a period in-between. I thought it would take a few months as I had been on the coil for 7 years and thought it would take a while for my body to regulate - obviously not. We got our first positive pregnancy test really quickly too - at only 6dpo. We were over the moon! So excited that I couldn't stop testing - the thrill of that little line getting darker day by day was amazing. I finally stopped testing 2 weeks later when the line was appearing before the control line! 

We were too excited and told immediate family almost immediately. Our parents were just as excited as us. For both sides it was going to be their first grandchild. 

I'll be the first to admit, my pregnancy was not an easy one. I didn't 'bloom' in pregnancy instead from about week 7 I was diagnosed with Hyperemisis - I couldnt keep anything down not even water. But even that wasn't enough to stop our happiness, I may have been miserable and being sick constantly but we were still looking forward to our little one's arrival in a few months time. 

We were so excited that we couldn't wait until our 12 week scan to catch our first glimpse of our little one so we paid for a private scan at 8+4 - we both cried as we seen that little bean appear on the screen with a strong beating heart. A few short weeks later we were seeing her again at our 12 week scan! She was jumping around, waving her legs and arms and looked perfect (to us) but not so perfect to the sonographer who uttered those words I will never forget at the end of the scan 'I have some concerns about your babies development'. She explained that our baby had something called a Cystic Hygroma at the back of her neck and her measurement for the NT fluid was well over the normal limit at 11mm (the normal being below 3). She went to get the consultant who confirmed the same. From then on I felt like my whole world stopped and some evil nightmare has taken over. 

The consultant confirmed that NT fluid was very abnormal. She told us that 70% of babies would test positive for a Chromosomal Disorder the main 2 being Downs and Turner syndrome. We agreed to a CVS test, not because it would change our minds on what to do with out little one but because I just had to know what was going on and if anything could be done to help her. 

In the end I had to have 3 CVS tests because the first 2 did not get enough tissue sample for the lab to grow. The third test came back positive for Turner Syndrome. For those that dont know Turner Syndrome only affects females, instead of their chromosomes containing 'XX' like a typical female they are single X or 'X0' - X-nothing, they have only one sex chromosome. This causes various problems including infertility and short stature but didnt seem the end of the world until we read that for some reaon the medical profession has not yet answered almost 95% of babies diagnosed with Turner Syndrome will miscarry. 

Those statistics terrified us. We were offered a termination at that point but declined it - we had to give our baby girl a chance she so deserved. So we fought on, determined that our little girl could prove the doctors wrong and make it be with us.

So we were classed as a 'high risk' pregnancy and put under consultant care for the remainder. The consultants wanted to keep a close eye on our little girl so arranged for regular scans. The news we did not want to hear came at our 16 week scan. I could see this time for myself as soon as the scan started that it was not good news. The consultant confirmed that our little girls Cystic Hygroma had gotten much worse - it had went from 11mm to over 40mm in just a short few weeks, it was now all over her head and looked like she was wearing a helmet. She also had a build up of fluid in between her skin, I think this is called Edema and also fluid on her lungs - the doctors said this build up of fluid was known as Hydrops and babies with Hydrops have a 0% chance of survival. They were lovely and still gave us optiosn, they told us we could stop the pregnancy now or we could continue and let our little one pass away on her own time. 

We went home to think about it overnight and I did some internet research determined to find a story similar to ours with a positive outcome. Instead all I found was the horrible outcomes - the 0% was certainly looking likely. 

We came to the difficult decision to stop the pregnancy. I couldnt go on thinking about my precious little girl getting worse inside me. The doctors told us she was in heart failure and she was smaller than she should be because of the pressure of the fluid on her little body already. They couldnt answer me when I asked them if she was suffering but I didnt want her to go that way 

So we went into the hospital the next day and were given the first tablet. We went home and returned to hospital 48 hours later where they began to induce me at 9:30am. Nothing much happened for most of the morning and early afternoon apart from beginning to feel uncomfortable. I was much calmer than I thought I would be. I think deep down I knew we were doing what we had to for our little girl. It wasnt fair to keep her going when she was suffering so much. I wished so hard that I could do something to make it different, I would have done anything to change things so that she could make it. 

My waters broke later in the afternoon and the pain started soon afterwards. I was given diamorphine and it made me so woozy and so sleepy I felt out of it for the next few hours. I had the first lot at 5pm and by 8pm the pain was back so they gave me more. At 11pm they done an internal and told me they wanted me to try and push shortly. They came back at 11:30 and I delivered my beautiful baby girl shortly afterwards into a bedpan on the bed because it was the only way I could push down properly 

They took her away and came back to try and delivery my placenta - but it was so far away and too well attached still to come away on its own. They started talking about taking me to theatre but in the end the doctor managed to remove it with forceps. 

We got to see our gorgeous girl shortly afterwards. She looked so perfect - all fully formed and peaceful looking just so so very tiny. We named her Emily. I couldnt bare to look at her for long it literally broke my heart into tiny pieces so they took her away just after midnight. 

The midwives were so lovely. The one who was there when I delivered even cried when Emily arrived I dont know how they do their jobs. I just hope the good times outweigh the bad for them. They are truly angels. And made what was the worst day of my life so much more bareable. 

I still dont quite believe she is gone and that this has all happened. I feel like I am in a daze most of the time. Our sweet baby girl that we wanted so very very much and were so looking forward to holding in our arms is gone and we will never get her back. Instead we are getting ready to have her funeral tomorrow. 

We were offered cremation or burial and opted for a burial because she was so small we wouldnt get any of her ashes back to scatter with a cremation so it felt more like a 'disposal' than a goodbye. At first I thought I wanted her in the shared baby garden at the cemetry but then when once I had made the arrangements with the funeral directors I paniced and we have now bought her a private lair where she can have her own headstone and little space for a garden. It is still in a part of the cemtetry that is only for babies and although I know in my head that she is not there and it makes no difference I still find it nice to think of her playing with the other angel babies and having friends. 

I am so thankful for BnB and all the wonderful ladies on her who have supported me through my whole journey. I think in the 5 months I have been here I have been through all of the sections - TTC, First Trimester, Gestational Complications, Second Trimester and now I belong in here I sort of have a look in the stillbirth section and the 2nd Trimester losses too though - I know I dont belong in there really but I hate thinking about what I had to decide for our little one. Sometimes I feel so guilty and think I done the wrong thing - should I have just let her carry on and waited to see when she was ready to go? Did I make the decision because it was really best for her or was it because it was easier for me? Could I have done something different?

And now on top of all the guilt I already have I have started to think about TTC again and that makes me feel awful. I havent even buried my baby girl yet and I am thinking of this! I know I wont be replacing her, I never could, she will always be my special girl who is carried in my heart but... oh I dont know I feel like I am such a horrible person. 

Well if you have made it this far - well done! Sorry it is so long, I just had to get it out. Perhaps it was almost theraputic. 

I just hope I find the strength from somewhere to get through tomorrow without breaking down completly.


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## collie_crazy

And today's update


Thank you so much ladies. I guess I know you are right. I know deep down I had no choice and it was kinder to let Emily go peacefully than have her struggle on But I still get hit with huge waves of guilt. I also know I could never forget her, or replace her - she will always be my gorgeous and special little girl I just wish so much I could have a hug. 

The funeral went OK yesterday. Seeing that little white coffin was horrific and it really shook my OH up too as he sat with her on his lap the whole way to the cemetery I think I was in a daze most of the 30 minute drive - I just kept staring at the coffin and wanting to hug my baby girl or kiss her tiny hands. Its all so unfair. 

My mum read the Little Snowdrop poem that is in my signature and I said a few words then read this poem - 

I never got to hear you laugh 
you never saw me cry 

Didn&#8217;t get a chance to say "Hello" 
you never said "Goodbye" 

I didn't think that I could feel 
so sad, lost and forlorn 

I never knew God chose his Angels 
before some of them were born 

Your life was short yet special 
I shared it all exclusively 

I felt you breathe, I felt you kick 
you were alive inside of me 

And although we are not together 
we're not really apart 

For you'll always occupy a space 
deep within my heart 

Time they say will ease my pain, 
but every day now I cry 

When I wish I could have said "Hello" 
and heard you say "Goodbye"

~ Author Uknown


and my partner released a baby pink balloon with Emily written on it. 

I dont know how I managed it but I kept it together. I even helped to lower her tiny coffin into the ground without breaking down. But when it was time to leave I wept because I didnt want to leave her alone there in the ground but I also couldnt stand there and look at that tiny white coffin 

Now I feel like I am lost. When she was still here, we were fighting for her and hoping she would make it. Everyday was a milestone. Then we had to be strong and make the best decision for her. Then go through the delivery and saying goodbye. Then came the arranging of the funeral and yesterday the burial but now there is nothing more to do... I feel so lost 

Have just remembered we need to choose what to have on her gravestone


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## aaaaa

Hugs and peace to you and your family. My the Lord wrap His loving arms around you in this difficult time.


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## Neversaynever

Collie...absolutely heartbreaking :hugs:

You are truly an inspirational lady and a perfect mommy for Emily :hugs:

You made a mothers choice that was in the best interest of your daughter. You will never replace her...impossible to do. 

Please don't feel guilty about wanting to try again...take your time and I only wish that you didn't have to go through this sadness. 

I'm not very good with words but I really am so sorry you all had to go through this :hugs:

XxX


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## mum2beagain

mt thoughts are with you and your family im so sorry youve had togo through this no mother deserves this xxxxxxx


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## sweetm

You are such a brave woman for sharing Emily's story. It was heartbreaking to read about your loss. Don't feel bad for wanting to try for another baby - you know that Emily can never be replaced. Emily was a gift, one that taught you the deep love of being a mother to a baby yet to be born. You should not feel guilty for wanting to experience that love by having another child.


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## chichestermum

Im so sorry you and your family had to go through this. You were such a brave parent making a heartbreaking decision and the funeral sounds as nice as it could be under the circumstances. Your angel brought so much happiness to your lives, keep hold of that! xxx


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## MummyMEE

Love and hugs to you sweetie xxxx


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## lilvixen

I'm so so sorry for your loss, those poems are just beautiful, made me cry :hugs: I wish you every strength for the future xxx


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## Nyn

sending you lots of love and hugs hunny, you did what had to be done, don't feel guilty. I'm so so sorry :hugs:


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## kosh

i am so so sorry for your loss. :cry:
i read some of your first posts but only now found out everything that happened afterwards. you're extremely strong, don't feel guilty.
look after yourself and your DH. :hugs:


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## green22

I'm so sorry for your loss. I cannot even begin to imagine what it must be like for you and your family. All of the stories of loss are just so heartbreaking and you all seem so strong and brave. I just wanted to say I hope you find peace and you are in my prayers x x x


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## sjulias67

So sorry for your loss. Hope you find the strength and peace to overcome this sad moment.

You are in my thoughts and prayers.


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## steph.

Collie so sorry for your loss :( Emily was blessed with a very special mummy. Dont feel guilty about TTC again. Emily's little brother or sister will have a little angel in heaven watching over them.


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## Luzelle

Your story is beautiful. Thanks for sharing it and for sharing Emily's life very much loved little life with us.


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## abi17

I was heartbroken to read this but your little angel Emily is not suffering no more, she is very lucky to have such kind and caring parents who love her very much. Im sorry you had to say goodbye to her so soon. After reading this i went to church and lit a candle for emily. RIP sweet emily look after your family and continue to look over them X


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## Lottie86

Sending so much love to you. You made the hardest And most loving decision ever to relieve her suffering by taking the pain on yourself and I am sure that Emily is grateful to you for this xxx

Take care of yourself xxx


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## CatherineK

Thank you for sharing, and we are so sorry for the heartbreak you've had to go through.


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## suzzle

I am so sorry for the loss if your beautiful baby girl :hugs:


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## tummymummy

I am truly sorry for your loss, i send all the love in the world to you and your partner at this awful time. :hugs: xx


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## happygal

im so very sorry for all you have been through x


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## thedog

I am so sorry xxxx


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