Anhydramnios aka: No Amniotic Fluid

[peepacabra]

Hi Everyone! This is my first time posting on here after being a creeper for so long. I wish I was posting under better circumstances, but here is our situation. Hopefully some of you have success stories or at least some idea of what we can expect.

I am currently pregnant with our second child, another girl (Scarlett) due 2/12/13. Our first daughter, Shelby was born after a relatively normal pregnancy with the exception of too much fluid, which is commonly associated with people who have diabetes (I have type 2).

Anyway, at our routine 20 week ultrasound with Scarlett, we found out that there is virtually no fluid around her. She has both kidneys and bladder, which are functioning, though very small due to such small levels of fluid. They sent me to the hospital to check for ruptures, which there were none. So, basically my placenta is just not producing the necessary fluid, despite my high intake of water every day. Her only other complication at the time was enlarged heart, most likely associated with small/non developed lungs.

My OB was very doom and gloom, suggesting that we would be lucky if Scarlett made it to the viable age of 25 weeks gestation, and that even if she did, she would basically die. I was devastated. However, seeking a second opinion we went to our high risk specialist, he said that if we got to 25 weeks, then they would start giving us steroid injections, and monitoring her dopplers and fluid levels (which never went up).

Fast forward: We are now at 29+2 days. She is a bit small, just over 2 lb 6 oz, but I just got another round of steroids, which should help with that. Her dopplers aren't great, but they're not horrible either. She is moving wonderfully and her heart is beating great! Also, the last piece of good news is that though they can't measure lung size well on the ultrasound, they did see her chest moving up and down, which is an indicator of lung function. The docs are still very cautious, but have reminded me that the situation could be much worse.

The only thing that troubles me is that since every case is so different, they can't give me even a remote idea of what to expect. It could be very good, or very bad. It just depends on the baby. So, that's why I am here. Have any of you guys had this? I want to hear the good and the bad. Thank you for your support!

PS: Sorry for the long post. I promise not to be so long winded in the future

 

[summer rain]

I have no personal experience of this but I do hope everything turns out ok for you guys and your LO is ok! Xx

 

[cherrylee]

Oh what news to have to deal with, I'm sorry I don't have any experience/advice. I am sending positive vibes to you and your family, I hope your LO does great!

 

[linaa]

I don't have experience of what to expect, but I am in the same situation as yours, they discovere at week 17 that there is no fluid around the baby, due to the fact that there is no amniotic fluid they didn't have a clear idea about the presence of kidneys or bladder ... i am currently at week 27, don't know what to expect, the doctor was surprised last week that the baby is still alive my baby is kicking me all day long but cannot change position because of no fluid thing, the dr told me to expect a bad and sad ending, i don't know when will be the end of this... my due date is 6 march 2013

 

[Andypanda6570]

I don't have experience of what to expect, but I am in the same situation as yours, they discovere at week 17 that there is no fluid around the baby, due to the fact that there is no amniotic fluid they didn't have a clear idea about the presence of kidneys or bladder ... i am currently at week 27, don't know what to expect, the doctor was surprised last week that the baby is still alive my baby is kicking me all day long but cannot change position because of no fluid thing, the dr told me to expect a bad and sad ending, i don't know when will be the end of this... my due date is 6 march 2013

I am so sorry, please don't give up yet, have you gotten a second opinion ? i would do this if you have not.
I hope both pregnancies are ok and something can be done for you both .
Sending so much love to you both.. XOXOXO

 

[peepacabra]

Hi everyone! Thank you so much for the well wishes and replies. I am very sorry to hear about your situation as well Linaa. My regular OB is constantly warning me to expect a bumpy road, but my maternal fetal medicine specialist is just taking it week by week. Apparently, they see a lot of people with this condition, and sometimes the outcome is good, and sometimes very bad. In our case, we don't have the usual complications of renal or bladder failure, so what teeny tiny bit of fluid is in there, Scarlett is swallowing it and peeing it out. It's just not really enough to give her the boost she needs. Have they been giving you steroid injections? They've been doing that for us and it seems to have helped a lot with her size issues (and hopefully lungs). They acted like the situation was pretty bleak until we hit 24 weeks. Since then, it's much more hopeful because every week is a milestone. I'll keep you in my thoughts and hope both of us have a good outcome. I have my 30 week appt tuesday. Hopefully it goes smooth enough and I don't get admitted! I'd love to make it at least to 32 weeks!

I'll keep everyone posted. Thank you!

 

[linaa]

thanks all for your wishes and thoughts, I had 2 other opinions they all said the same thing... the problem is that there is no fluid at all, so the baby is not swallowing it and not peeing at all, steroids shots in this case are useless, the lungs won't develop at all... due to absence of fluid they didn't even find out if the baby is a he or a she... everyday pass with the baby kicking and moving I feel some hope...

 

[Fuchsia1412]

Linaa this is such a sad situation..even sadder because it's not just the complications but the fact that noone has given you any hope or idea of where to go. Where are you, can I ask? UK,USA...elsewhere? I don't know much about this complication either, but sincerely hope that outcomes are positive for both of you.

 

[AllMacsNow]

I have no experience with this, but didn't want to read and run.

You're both in my thoughts and prayers.

 

[amjon]

If you're at 27 weeks I don't understand why they don't get the baby out ASAP as they probably won't live too long in you with no fluid. It seems they would be better off out and in the NICU and to be evaluated.

 

[linaa]

thanks all for your thoughts, dear amjon, they discovered the situation at week 17 i didn't want to be induce it's like i was killling my baby because his heart is beating, and now after all this time i waited , I can wait until the baby decide to enter this world, i wanted to give him a chance to grow before he can be vealuated, he was 350 grams when they discovered the situation, he is now 900 grams and kicking and moving, i wanted him to grow so i can have the chance of holding him for a while... maybe i am wrong but i decided to let nature take control...

 

[peepacabra]

Well, I went to see my regular OB today, thinking it was just a typical belly measurement and that's it, but apparently, he chose this time to tell me to start making funeral arrangements for Scarlett. We have no illusions about what to expect with her, but to bluntly hear that she's most likely not going to make it, especially at 30 weeks is really horrible. Especially since the past ultrasounds have been going well. She's just been a normal baby who happens to have no fluid around her.

We are beyond devastated.

I asked him if he has ever had a positive outcome with patients diagnosed with this, and he said no. I even asked him why they let me continue on this far with the pregnancy if there was no chance of her surviving, and he said it was because there is always the chance of a fluke miracle. I've been taking steroids, watching my glucose, drinking tons of water...everything. I know there is always hope, but it's hard to keep that candle going when being hit with blunt truth like that.

Anyway, I have an appt with my specialist on Tuesday. I'm going to ask to speak to him and see what his honest opinion is. I know that in most cases of Anhydramnios it is a fatal outcome, but I really thought our case was different.

I'll keep everyone posted. Thank you so much for reading.

 

[AllMacsNow]

I'm with amjon... Peepacabra, if you're this far along, why won't they induce/try a C-section and try to give your Scarlett a chance outside the womb where there are so many medical interventions that can be made?

My heart is with you, and with Linaa as you go through this time and try to make the best decision for your families.

 

[peepacabra]

Hi AllMacsNow. You know, my husband just asked me the same thing (pertaining to why keep her in there). I guess while getting the "news" today, my brain was too stunned to be able to process that. It got me thinking now though, my MAF Specialist is really blunt too, and he has never come to me with such a blunt diagnosis. I think there obviously must be more than "a fluke miracle" chance if they're continuing to wait. I mean, if there wasn't a chance, why did they even give me steroids? Now the more I think about it, the more I think it's just my OB being super cautious. Don't get me wrong, I know most cases of this are fatal, but most cases have bad bladder or renal function. I know for a fact my specialist has had patients whose babies have survived with the same diagnosis.

So, until I hear it straight from my specialist that there is no chance of survival, I'll keep my hopes up. I know that I'll be prepared for the worst, but I'll keep my hopes up for the best.

Thanks everyone!

 

[AllMacsNow]

That sounds right to me too. They wouldn't be intervening at all if there was no hope for your beautiful little girl. Plus, so many regular doctors feel out of their depth with scenarios this rare. Here's hoping your specialist is still more optimistic. When do you see him/her again?

 

[peepacabra]

Thank you for saying so. I go back on Tuesday (12/11) to see my specialist. The more I sat here talking with my husband and mom about it, the more I thought that the OB is just going by textbook, and by standard cases of anhydramnios, which usual include renal failure and or bladder disorders. I'll talk to my MF doc and see what he thinks.

I spoke to the MF spec doc last week before my last round of steroid shots and he was saying he didn't want me to get admitted because they'd induce me when they tried to monitor me, and that, "At 29 weeks, her chances kind of iffy. I'd like to go at least 32 weeks." (that's pretty much his direct quote). That doesn't sound like a guaranteed death sentence to me. Perhaps I'm grasping at straws, but as a mom, I think I'm allowed to do that. I just honestly feel my little girl has what it takes to make it.

Thanks so much for talking with me. *big hug*

 

[LeighAnne]

Praying for you and baby Scarlett.

Please keep us posted in this thread as you are heavy on my heart.

 

[peepacabra]

Okay, so as of tomorrow, I'll be 31 weeks! That's a pretty big achievement considering they never thought I'd make it past 24. I have my weekly ultrasound tomorrow, and should everything be normal, they'll let me go home to my family. If her dopplers are crazy or they think she's in distress, they'll admit me and monitor me until they decide to induce me. My relationship with the big guy upstairs hasn't been that great lately due to these circumstances, but I am praying tonight that whatever happens in the next few hours/weeks, that it's all for the best for Scarlett, and that she makes it through.

I'll let everyone know how it goes. Thank you again for all the love and support.

 

[babydrms]

Best of luck tomorrow - someone has to be the miracle, why not Scarlett?!?

 

[linaa]

hello everyone, I saw an ultrasound specialist last friday, only to confirm the bad news, the baby has a missing kidney and the other one is malformed and cystic, and that's the reason for the absence of amniotic fluid, the baby also had a sloping head and no lungs function... it is so devastating knowing that the this condition is 100% fatal. what I fear the most that the us specialist suspected that it is something genetic since it is my first baby, he even suspected something called meckel gruber syndrome which i never heard of before, now i will ask my original dr about genetic counseling. sometimes I accept the fact that baby will die soon but I pray to GOD to be able to have healthy baby in the future...