Anyone have any experience with this? I was just diagnosed today and I'm 39 weeks, 3 days. I actually have a repeat c-section scheduled for tomorrow and my OB says it is "okay", but they usually induce at 37 (!!!) weeks for this diagnosis because of the risk of stillbirth. 
It is going to be a long night tonight.
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I'm sorry you're worried! No experience here, but I hope everything goes smoothly tomorrow
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@macintosh: Thank you
I just hate that every person I ask who is either an OB or every article I read basically says "induce by 37 weeks" and risk, risk, risk. 
Very little reassurance out there. 
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Sending prayers and positive thoughts!!
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Thinking of you!
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I'm so sorry!
Get rested up and FX for a nice, easy repeat c/s in the morning! Do you think if it would make you feel better, they would admit you tonight for monitoring? -
No idea but I'll be thinking of you tonight and tomorrow! If it makes you feel better at all, this is what I would tell myself if I was you:
1) Your doctor has been to medical school and understands this condition and has deemed it safe to wait until tomorrow. And doctors generally err on the side of caution, especially where babies are involved. So if there was a big risk to wait until tomorrow she wouldn't have let you.
2) from my 2 min reading about this it seems that it is a condition that gets gradually worse as the bile enters the blood stream. It doesn't go 0-60 in 12 hours. The fact that you were diagnosed this late probably means that it is pretty early in the process. If you had enough symptoms to diagnose at 35 weeks they'd make you wait another 2 weeks to deliver probably. You didn't develop enough symptoms to diagnose until 39 weeks so 1 more day isn't going to make a difference.
But... easier for me to be rational than you! I'd worry too because thats what moms do. But I'm sure that you and LO will be just fine.
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@HLK208: @autumnlove: @FliegepilzHut: @Mae: Thank you so much, ladies. Is it weird that it helps to share the burden just a little?
@FliegepilzHut: The NST was reassuring, so my OB didn't think we needed to do anything tonight, but if I hadn't been already scheduled for tomorrow, I would have been according to her.
@Mae: That's what I'm thinking. I'm pretty risk averse myself, and I figure that if she thought it would make any difference, then I'd be holding this baby right now. I just don't know if the rate of rise in the bilirubin levels make any difference. My level was drawn last Thursday and is in the "intermediate" range. It just makes me wonder what it is today... The stupid lab takes at least 5 days to come back, so it wouldn't have made sense to re-draw it today.
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@Espion: That's good news, then. Definitely agree that it helps to share! Sending lots and lots of good thoughts and hoping for a restful night!
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Good luck! I am sure everything will work out!
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Thinking of you!
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I am so sorry! You must be so miserable & worried. I had it...if I remember correctly I was diagnosed around 33/34ish weeks & I delivered at 36 (twins). My dr's monitored it closely and while it made me miserable my dr's said my babies were fine & not as risk. Of course, this didn't stop me from constant worry. I'll be thinking of you & good luck tomorrow!
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I'll be thinking of you. Good luck tomorrow
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@matador84: @jhd: @Purpledaisy: Thank you all! I've been up since 2 am poking at this kid and he/she is still bouncing around in there like an astronaut.
@Caly: Thank you for your support! I was (am) freaked out because everything I read says that you don't let these babies go past 37 weeks. Can't wait for this itching to stop!
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Thinking of you and praying!
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@Espion: Thinking of you today!
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@Espion: I just posted in your JANUARY group. But im a second time mama and had severe ICP with my son and currently have it now. I have an underlying liver condition that makes me at high risk of it, and I will deliver no later then 36 weeks. My son was a 34 weeker.
Your doctor should have absolutely delivered you yesterday, but I see you're being delivered today. Do not let them push it back. Despite what a previous poster said, things absolutely can go from fine to horrific in a short period of time. I don't say that to scare you, but so you can advocate. I'm a volunteer with the icpcare.org foundation and we have an itchy mama support group on facebook. So I'm very up to date with information on ICP protocols.
I'll be thinking of you guys today!
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Thinking of you today and can't wait for an update letting us know your LO is here safe and sound!!!!
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Just wanted to let you know I'm thinking of you! Hope your day has gone smoothly and you're already snuggling your LO!
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Thinking of you
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@dc yoga bee: @FliegepilzHut: @Mae: @avivoca: @Pancakes: Thank you so much, ladies!!
I just wanted to update this thread, because I got a lot of differing opinions. I have a friend who knows quite a few OBs, and she sent out my situation to them. My bile salts level was 35, but that was a week prior to my already scheduled c-section date of 39 weeks, 4 days. They were nearly split in half between, "35 is a low number, she should be fine" and "they should deliver her NOW, risk of stillbirth increases substantially after 37 weeks". Which begs the question of who to believe.
When trying to find "threshold numbers" (because you have to draw the line somewhere), some state that over 60 is severe, and others say over 100 is severe. Part of the problem is that the test seems to always take at least 5 days to return, so you are always behind a week.
In the end, most recommended that if I didn't have a repeat c-section already scheduled for the next day (I found out my diagnosis at my pre-operative appointment literally the day before) that I would've had one scheduled for the next day no matter what.
But hearing "just make sure your baby is kicking" seems ridiculous when the risk of stillbirth is high. If the baby isn't kicking...wouldn't it already be too late?
The tl;dr is that if you have itchy hands/feet that seem out of the ordinary, demand to be tested.
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@Espion: I just want to add to your post! In case anyone searches! I encourage you to look up more info on this website too, becasuse there is a high reoccurance rate if you guys plan to TTC again one day.
In normal people, the bile acid cutoff is 19-24 depending on the lab. For pregnancy, if it's above 10 you have ICP. If it's above 40, you have severe ICP. The issue is that labs don't make a special reference range for pregnancy. Then icpcare founder has been fighting to change that. She is constantly in touch with the two top ICP reaearchers. I am a volunteer with the organization, well we all are volunteers obviously! But this is so dear to my heart to help women. I spend a lot of time during the day helping women in our facebook group!
We have a wonderful support group on facebook, so women can help get proper care and find doctor recommendations. We can help you advocate because ICP is often overlooked. It's misdiagnosed as PUPPS, and often doctors say if one test isn't elevated, then you don't need to be retested.
This is all so false. I am on my second ICP pregnancy. Both with very severe levels becasuse I have underlying liver issues.
Google icpcare.org
There is tons of information and medical references and articles to help you get your doctor on board.
ICP requires delivery by 37-38 weeks at the very latest, if your levels have been very low and mild.
@Espion: your doctor should have taken the baby out the day they got your results! I keep thinking about you and how grateful I am your babe arrived safely.
Your stillbirth risk decreases to that of a regular pregnancy, if you are being treated. But if you aren't, it is so so so dangerous!
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@BabyPenguinXO: Thank you for the added info! I was scared, because if it was 35 last week, then what was my level a week later??
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@Espion: that's what is scary and why they deliver early! Levels can rise quickly. I'm lucky that my Tuesday bloodwork is always back Friday. They really need more hospitals to run the test. Ugh.
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@Espion: So I assume you had the c section and baby is fine??
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@Mae: Yes, I went in early the next day for a scheduled repeat c-section. Both DH and I were up and down the night before poking at the baby to get him to move around. We were more than ridiculous tired, but both sighed with relief as soon as he was out!
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@Espion: yay congrats!!!!
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@Espion: oh good. Congrats!
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@Espion: congrats on your successful c section! Sorry I didn't see your post sooner, I just had an ICP pregnancy in September.
Adding my story still in case someone searches this in the future. My bile salts were only an 11 at 36 weeks and they still had me end a vacation early and get induced at 37 weeks. The MFM we met with did say that opinions vary greatly in the medical community. He also said that the chance of still birth is relatively low with ICP, but there's still a chance and they don't mess around with that.
Regardless, I'm very glad you had a happy ending! Congrats again!ETA, it's pretty silly that they said to make sure the baby was still moving around. Because you're right, if you noticed the baby stopped moving, that would be too late! In utero infant death from ICP is sudden! That's why they don't take chances. We were scared to be induced early and asked if we could just be monitored. Maybe ultrasounds every day. They said that wouldn't make a difference because they could see the baby fine on an ultrasound in the morning and by afternoon the baby is gone. That scared us more than an early induction so we scheduled right away.
Glad you had a safe and happy ending, but I'd still be questioning my doc. 35 for bile salts seems high and considering how far along you were...I've read that a lot of women past 37 weeks are ordered to go straight to the hospital for induction once they are diagnosed! -
@Espion: congrats!!!!
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@Espion: congratulations, Mama. This all sounds so scary. I'm glad that you had the baby safely and that you and he are OK. I hope that others in the future who search for this find this information helpful!
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@SweetiePie: im glad your doctor was honest with you sbout monitoring! A lot of doctors actually tell women the baby is safe for a week or x amount of time if they have an NST or ultrasound. I'm part of the icpcare.org foundation that's eorking to spread awareness. Unfortunately too many doctors don't know the protocols. When ICP goes untreated there's a 15% chance of stillbirth. 15 sounds Low, except when you add stillbirth to it!
You are also spot on that they should have delivered her right away but it takes too long for results to come back. She also I think was already past 37 weeks, but none the less should havd been delivered as soon as they had the results!
I'm glad your doctors were on top of things. There is a pretty high reoccurance rate. So that's something to consider for the future to make sure you have the right care.
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bumping! such a serious concern!
I'm being induced at 36 weeks!
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@BabyPenguinXO: I am so glad you have knowledge about this and they are being proactive. I've been writing out H's birth story and the more I think about it, the more I feel like we were juggling with my son's life. I am so lucky I have a healthy little guy. Prayers for a safe delivery and a very short NICU stay for your little one!
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@Espion: thanks so much! you are definitely blessed and im grateful for you!! I hope to avoid a nicu stay! it sounds like she had a really good chance though
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Thank you so much for this thread!
My dear friend was diagnosed with ICP recently. She's 35 weeks. Doing nightly castor oil packs over her liver (small increments of time), and will start evening primrose oil next week. She understands an induction is imminent, and wants to do any sort of cervical ripening/softening that she can beforehand. She's finding a little bit of relief with the prescription she's on, but still so miserable.
There's no way I can understand what it's like, but this thread helped give me a bit of perspective, so I can better support her. All the love to you moms!! What a scary/uncomfortable diagnosis. I'm happy to see more research is being done.
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@littlejoy: tell your friend that there is an amazing support group on facebook called ICP Care/ itchy moms. There is over 2k members and I am an admin in it. It really is a wonderful place to learn and gather info, as well as vent to women who understand! I hope she has a safe arrival of her baby!
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@BabyPenguinXO: (and everyone on the thread) ... My sweet friend delivered her baby this morning at 36 w + 6 d. It was a long, but successful induction. Baby was 7 lbs, and very healthy. Mama is looking forward to being more comfortable. Thanks you for the information, I think it was really helpful for her.
She did a castor oil induction at home (she just wanted to soften her cervix as much as possible before going to the hospital). She said the castor oil really helped with the itching. So interesting.
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@littlejoy: oh such good news!!! Glad to hear she had a good birth and safe arrival!!
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I should say, she started the induction at home, then transferred to the hospital where she delivered the baby.
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