Cystic Hygroma (large NT@12 weeks)--not a good scan--Updated :)

[Chester1]

hi everyone, thanks to all of your kind words and gigglebox i see we were about the same time along, so thats so cool for me to relate to. i was just starting to feel better with the morning sickness thing too so although i know i would be feeling better anyway its a bit bittersweet to know i feel better because she isnt with me anymore. at the moment i am not really wanting to go to bed in case i have weird dreams about the whole thing. i have to wait 6 weeks and get a check up, i think physically and mentally! will keep checking in to follow your news. and yes because even having a cystic hygroma is rare there isnt many people to physically talk to about this whole journey. it appears not many have been through too much stuff, which is great, but for us that have its very hard to find people who really understand what its all about....i do have my fingers crossed that you are on the path i wanted to be on!!!! take care xxxx

 

[sunbaby777]

hi gigglebox. i sadly miscarried three days ago. all very surreal i had bit of cramping and then bleeding. went into high risk unit and they basically 'helped' it along. it wasnt something i would wish anyone to go through. especially us mums its against our nature, we want to protect at all costs. i however also needed to have a dnc as the placenta didnt come away well and lots left in. it was all very emotional and nerve racking. it seems sometimes like months ago and other times i cant even believe it happened. i dont think its all sunk in. thats why though i love to come on hear and see the good news. it keeps my chin up!

I am so sorry to hear the news of your loss. I know this has been a rough ride for you, and I remember how devastating it is to go through - like it was yesterday. I hope you find the strength to get through it and try again. Another baby won't replace the one you lost, but it will help to heal your heart. Wishing you well. Please keep us posted and feel free to contact me directly if you need to talk with someone who has been there.

I'm actually not religious, but these words still gave me a lot of comfort:

An Angel in the book of life wrote down my baby's birth.
And whispered as she closed the book "too beautiful for earth."
~Author Unknown

What Makes A Mother

I thought of you and closed my eyes
And prayed to God today
I asked "What makes a Mother?"
And I know I heard him say

A Mother has a baby
This we know is true
But, God, can you be a mother
When your baby's not with you?

Yes, you can he replied
With confidence in his voice
I give many women babies
When they leave it is not their choice

Some I send for a lifetime
And others for the day
And some I send to feel your womb
But there's no need to stay.

I just don't understand this God
I want my baby here
He took a breath
and cleared his throat
And then I saw a tear

I wish I could show you
What your child is doing today
If you could see your child smile
With other children and say

"We go to earth to learn our lessons
of love and life and fear
My mommy loved me so much
I got to come straight here

I feel so lucky to have a Mom who had so much love for me
I learned my lessons very quickly
My Mommy set me free.

I miss my Mommy oh so much
But I visit her each day
When she goes to sleep
On her pillow is where I lay

I stroke her hair and kiss her cheek
And whisper in her ear
Mommy don't be sad today
I'm your baby and I am here"

So you see my dear sweet one
Your children are okay
Your babies are here in My home
And this is where they'll stay

They'll wait for you with Me
Until your lessons are through
And on the day you come home
they'll be at the gates for you

So now you see
What makes a Mother
It's the feeling in your heart
It's the love you had so much of
Right from the very start

Though some on earth
May not realize
Until their time is done
Remember all the love you have
And know that you are
A Special Mom

Author Unknown

 

[gigglebox]

Heddafish---thank you SO much for sharing. It is truly a frightening diagnosis; I am beyond happy at the way things are progressing for myself and for you. I also had been on babycenter and found the CH success thread that really helped me when I had no hope. Now I am cautiously trying to celebrate things; I think it's still important to do that. Today I revealed the baby's gender to my coworker and was happy to be able to celebrate that. I know exactly how you mean about being robbed of joy...I had felt that way too.

I wanted to let everyone know that I ended up talking to the doctor who did my initial scan today. He was quick to defend himself on his actions. Though he did apologize, he mostly just ticked me off. I told him he gave my baby a death sentence that day. He said "i'm sorry if I gave you that impression." It had this undertone to it, like what he meant to say was, "I'm sorry that's the way you interpreted what I told you." He went on to say that many babies with the CH don't have a good outcome, but a CH doesn't always mean a chromosomal issue, and if it does, even a baby with a chromosome problem can come to full term and be otherwise OK. I told him that he didn't tell me any of that the day I was in his office...he again side-stepped the point I was trying to make. He wasn't comforting at all...I do remember him telling me, "I see this a lot, and it usually doesn't end well." In all honesty I was so annoyed with how he just dodged all the points I was trying to make that I didn't even listen to what he was saying for the last 2 minutes of the conversation. Oh well. What can you to...

Chester--That's pretty neat that we were on the same time frame...also kind of weird lol!

To the both of you--I would like to hope that maybe we...oh lord this is going to be cheesy...found each other on here to comfort one another. I hope you both keep me posted I will continue to update this thread as long as I still have updates to give.

Finally, sunbaby--that poem was beautiful and definitely made me tear up!

 

[sunbaby777]

I have sat here this afternoon and read your entire thread. Your situation almost mirrors mine. My baby was diagnosed at our 12 week scan with a 4.1mm cystic hygroma. I was given very thorough information about what this could mean by a genetics doctor but the entire conversation was very doom and gloom and carried a "sorry for your loss" tone. Needless to say I was devestated and an emotional wreck and I still have my momments. My husband an I decided to get the CVS test and the FISH and full test came back normal for chromosomes and we found out we were also having a boy. I have not had any other detailed scans since and I am 20 weeks in three days. I have had two prenatal appointments since and have had an US at each one, as I also have hypertension and I am considered high-risk so my prenatal doctor does one at every visit. So far Squirt has been growing on target, is very active and his heart beat is fine. At our scan last Friday my prenatal doctor said that he thinks that the CH has resolved and that he doen't expect them to find anything on the 20 week scan on Thursday. We also have an echocardiogram scheduled for October 24th to check the heart. I am very optomistic. This is our frist pregnancy. I can totally relate to the stress you are going through. It is such a wait and see kind of thing and I find myself experienceing such a huge range of emotions from anger, to anxiety, to joy, and sadness. I am angry that the diagnosising doctor gave us such little hope, as I feel like she robbed me of my joy. I should be happy and excited, but instead I have felt detached and unsure and then guilty for feeling that way. I feel like I can't really celebrate until after the next two scans. I did alot of research and found that there really isnt much out there. I keep reminding myself that so much is unknown. No one knows how many women who terminated their pregancies, and there are alot of them as this is the most common advice given women in this situation, would have had positive outcomes. we also don't know how many women had them at 12 weeks, but never got the scan because it is not available and then it had resolved by 20 weeks and they never even knew they had it. I also put into perspective what a positive outcome is, for many doctors I think that it is a 100% no complications pregnancy and healthy baby, where for me it is something that the baby can survive and is treatable and manageable. I found a lot of support from the babycenter support group, I never posted there but the success thread really helped me, and another website, which I can't remember but if I find it I will post it. That website's purpose was not support, but to inform doctors that successes do happen so that they will not immediately advise women to terminate. I fortunately was not advised that this was my only option but was told that I would probably have a very sick baby and that I would probably miscarry anyway. It was very frightening, but things are looking up. I can't wait to hear how your story goes and I will keep you posted as well. Hopefully we can post our success stories on these sites as well. Good Luck and thatnks for sharing your story.

If you haven't already, check out BeNotAfraid.net and read their success stories. Those ladies helped me get through some tough times, and I am eternally grateful.

You can also visit the page I created for Cystic Hygroma on Facebook: https://www.facebook.com/cystic.hygroma

Click on Discussions and then Success Stories.

This is not based on statistical data, but from what I have read over the past year and a half, most of the babies without chromosomal issues (who happen to usually be boys) make it through the pregnancy just fine. If the CH doesn't resolve itself before birth, there are treatments. (More info. on treatments on Facebook page). Also - if the CH doesn't resolve itself before birth, look into the EXIT procedure. This can save your baby's life if the airway is blocked by the CH. I have not read many stories where the babies had heart problems. It's usually the girls with Turner Syndrome that have the heart issues. I think both of you have made it past the worst hurdles. Wishing you well. Please keep us posted.

Info. on EXIT procedure: https://www.childrensmemorial.org/depts/fetalhealth/fetal-exit-proceedure.aspx

 

[Chester1]

thanks so much sunbaby, i have copied the poem, its beautiful i am thinking i may use it on a canvas that i want to make up for her since i dont have much else. yes its very meaningful and really really nice thank you so much for taking the time.

it doesnt sound cheesy either gigglebox, if anything i was feeling like o gawd she may think i am a stalker of some sorts saying what i did, that we were about the same time. i would have been in my 16th week too. its comforting to me that you are able to carry on, although i know you are still a bit stressed, its very hopeful.

i agree with sunbaby... i did pick up in a lot of my research in the time i was needing to do that, if a boy is diagnosed with a CH and has clear CVS testing etc the chances are far better, and most times (not all, by any means more common) if the CVS came back with a chrome problem it was more likely to be a girl and its more common for a girl to have T18 and of course turners is only a girl - weird but as soon as i found out i was having a girl through the CVS i knew it wasnt good for her. i knew the baby would have a better 'chance' if it was a boy. i hope that all makes sense and doesnt scare anyone. of course its not factual info it was just what i was picking up out of the research i was doing when we found our baby had a CH.

heddafish another site that gigglebox recommended to me at the time was the babycenter.com they have a section for cystic hygromas and success stories. i read them all i think!! and i still go on and check up on the ladies good news there also. it really does help at these horribly tough times of playing the waiting game.

 

[Mommy2be20]

Aw, that poem was beautiful

gigglebox - I just realized yesterday that you were apart of the depo thread... now I'm even happier (not that I wouldn't have been either way obviously, but you know!) that your story is turning around for the good! Keep on cookin' this little miracle of yours!
And also... regarding that doctor he sounds like a real piece of work and I can only imagine how frustrated you were talking to him, he couldn't swallow his pride and genuinely apologize for his insensitive beside manor?! I often wonder how people like that sleep at night! I hope you don't ever have to deal with that jerk again x

 

[gigglebox]

Momma2B--how long were you on depo for and how long did it take you to conceive?

 

[Mommy2be20]

Momma2B--how long were you on depo for and how long did it take you to conceive?

Oh goodness, I had 2 shots, one of which overlapped the other because I never stopped bleeding the second shot didn't stop it either.. but it ended up working out to be something like 4-5 months on Depo. Took me 4 months from the time my shot was due til I had my first chemical... in total though, 9 months to fall with this sticky! So, I consider myself relatively lucky, but never ever again will I put myself on that CRAP!! Dirty drug!! I think I recall you had the nonstop bleed issue too, didn't you?? How long did it take you to fall with bun? xx

 

[heddafish]

My husband and I went to our 20 week anatomy scan yeterday an the CH was gone. It completely resolved!! We are so relieved. The docor was trying to see the heart but he said he wasn't able to see much as the baby was not cooperating and wouldn't roll over. He did say that there was nothin major he could see and hopefully the baby will cooperate with the echocardiogram on Monday and they will be able to see if there is anything minor going on. He said that everything he could see looked good though an very healthy. I told him about our anxieties and shared with him the horrible way we were told about our prognosis and how the genetics doctor left us with no hope and his response was , "she can be blunt like that but she doesn't work here anymore!" this is great but I think I might try to find her when the baby is born and send her a letter with a picture asking her to put our baby in her doom and gloom folder so that the next people she counsels can see that there is some hope in their situations. So if our echo comes out normal we are at 90-95% healthy baby, which is so much better then the 15% we were originally given.

 

[Mon_n_john]

What wonderful news, congratulations! You see, miracles do happen.

 

[sunbaby777]

heddafish - That is wonderful news!!!

 

[gigglebox]

mommy2be20--yes, I bled for, I think it was 120 days. I also will never put myself through that hell again! it turns out my hormones are (well, were i guess) in perfect harmony and any type of hormonal birth control ruins my body and I bled a lot and have emotional issues they had been trying to "fix" my cycle for 4 years on different types of BC; turns out all I needed to do was stay off of it!

Heddafish--THAT IS AMAZING! I am so happy for you! I hope I'll be able to report equally as good news in the near future I was talking to my coworker today about everything and we again had the discussion about how some of the technology these days is too much, you know? We also had a discussion about doctors with bad bedside manner. She once took her 2 year old to the ER and the doctor insisted on a CT scan of her brain after she was throwing up; she refused to expose her to that much radiation...the doctor, irritated that she didn't take her advice, told her very bluntly that her daughter could be dead in 24 hours or possibly spontaneously die in 2 weeks!!! My coworker took her to her personal pediatrician the next day and her daughter just had an hear infection.

Ugh. Doctors...!

ANYWAY...I'd love to see pictures of your scan if you have any!

 

[Chester1]

congratulations heddafish!!! thats fantastic news. such a relief i know you will be feeling. i am so pleased for you and your partner. its what we ladies all pray for. i am really really pleased for you. in regard to the lady doctor with doom and gloom i think we all have come across doctors like that here, and while i dont want to defend their behaviour i just wonder if they are (sadly) numb to it and just are matter of fact without feeling cos they have seen so many. like police people get numb to the bad behaviours of people? i dont know but its still no excuse in these cases, especially when NOTHING is found after all. good luck - large smile on my face for you.....

 

[sunbaby777]

I agree with Chester. I think a lot of doctors have become numb. They are also so scientific about it. They have lost touch with the human factor. It's like they forget that this is one of the most important things in your life - just because it's only another appointment to them.

 

[Mommy2be20]

Heddafish - that's fantastic news hun!!!

 

[heddafish]

Not sure how to post a pic here yet but will try to figure it out in the next few days. Gigglebox, I hope you get great news too!

 

[gigglebox]

thanks heddafish! by the way, if you have the photo uploaded on your computer there's a way to upload it on here; you just hit the "go advanced" button below the box you type a reply in, then click the black paperclip picture in the toolbar area. From there you just upload the file from your computer.

Mommy--Do you have any other children? I am blown away by how amazing your bump is coming along! It's perfectly round! I'm showing but I think it's only obvious to people that know me. To outsiders I get that glance down where I know they're wondering if I'm fat or pregnant lol

On other notes...I think I'm getting a little closer to feeling more "regular" movements by bun! It's so weird, like someone's sweeping their finger across my insides...anyone else getting this?

I also accidentally slipped his name to my inlaws and they picked up on it immediately! I said his nickname (his shortened name) and then tried to play it off in hopes no one heard me...but they did and guessed his full name immediately! Oh well.

My MIL bought me an amazing drawing of an owl for his room (daddy wants to do an owl theme). I almost cried, but held myself together as I was in public

Next OB appointment: 11/1. Next MFM appointment (20 week ultrasound...eep!) 11/7!

 

[KendraNoell]

Aww I am so so so happy for you, gigglebox... this has been an amazing story and I am so touched by it.

 

[Mommy2be20]

I don't have any other kiddies, this is my first My MW was really surprised at my 14wk appt my uterus was halfway to my belly button already, I think my tum measurements start at today's appt I think I'm an early bloomer.. my bump started relatively early and I already have some pretty forceful kicks! I'm fairly petite though, I don't look like I'm turning 22 shortly that may have something to do with it.
Oh, my 20wk scan is the 4th.. how exciting!!!! And I just realized we're quite close in due dates! I love pregnancy brain..... took me this long to see that! Ha xx

 

[gigglebox]

how exciting! I know many woman that would envy that bump of yours! I wish mine was rounder but I never wanted to show too early as I fear how big I'll be in the end!

Keep me posted on how your scan goes. Are you hoping for pink or blue? and which do you think it is? I'm going to guess blue just one how big that thing is already! but to be fair, you did mention your petite size...they do say that everything can happen earlier in that case.