hi this is about my sister in law she has been diagnosed with a cystic hygroma and has an amnio that has returned negative so it is not chromosonal, she has another appointment 04 13 i just wondered if anyone else has experienced this? any reply will be gratefully received thanks safia
Well, all children with a CH are given a 50-70% chance of chromosome abnormality. That's what my daughter was given and she is perfectly healthy. And honestly, a 40-60% chance of survival with hydrops is HUGE. I know it doesn't seem like it, but it is. My daughter was given a 3-9% chance of survival even without hydrops. So maybe they know something they're not telling you. There was actually a girl on here awhile back who's amnio came back normal, and then they called her a few days later to tell her that it was her cells that they had tested and there was a problem with her baby. So even if that had happened, they would have realized their mistake by now. And the chances of that happening are so so so slim. A lot of babies with hydrops have tons of other issues with their organs (function and placement) so that's so great that she doesn't have any problems there. How far along are you?? Around 22-23 weeks they should do a fetal echo to get a good look at her heart. I know very little about hydrops, but I know they can have several causes and I've even read that in some cases where the hydrops are caused by severe anemia, that the hydrops can be treated by a blood transfusion in the womb. Have they talked to you about Rh disease? That's another cause of hydrops. I'm Rh negative and had to receive the Rhogam (sp?) shot during my pregnancy and right after delivery. There's also the possibility that the hydrops are indicating heart failure, but if her heart looks good so far that might not be the issue. I've looked at a couple of websites since I last wrote and actually found a site that gives babies with hydrops a 50% chance (what your docs are telling you). That is such a different story than what I was told when I was pregnant. I was told that if hydrops develop, there's no chance for survival. Sounds like your docs are going off of updated studies. So many doctors (including mine) go off of studies done 15-20 years ago. Okay, I'm babbling. Sorry:) I'll keep doing some research and if I find anything worth reading, I'll send it your way. Hang in there hun.
oh my gosh...that is crazy! they havent even talked to me yet about a fetal echo...so i dont know if they plan on doing that because he thinks her chances are so low!!! but yeah i asked my doctor about the heart and everything else and she said that there was nothing in his findings that there was anything else wrong with her organs except the hydrop in her belly...i am rh negative too and after each amnio i got that shot and i will after prolly any testing that they have to do where our blood could mix and before and after birth..i saw that blood tranfusion thing also..i wonder what the risks are?? i can't believe they gave you a 3-9% chance and you baby is wonderful!!! and i have such a higher chance and they are kind of pushing for me to get induced early and loose her...im also measuring ALOT farther ahead then what i am...im 23 wks and 3 days today and my doc said i was measuring 28 wks!!! so im not sure if it is the hygroma that is making me measure bigger or what and if that is the case do you think that isnt good?? i asked the specialist what the chances were that they were wrong with the first amnio and he said slim because it would be easier for them to mix up normal female fetus cells and her mothers cell then it would be if there was something wrong!! (i think i told you that already) so im suprised that they messed up hers like that! so i hope our first results were right! and if she is still born with the hygroma we will unfortunatley just have to put her thru surgery to get rid of it...and maybe a transfusion to correct her hydrops...because i think one of my doctors mentioned that anemia....i have a hard time listening when things are being said i dont wanna hear lol which is horrible becasue i need to hear everything!!! thank you so much again for everything and your support! its making me feel a lot better about the situation..even tho i still need to keep everything in mind so if god forbid something bad happens im not feeling like i totally let myself down..you know?? well what did you do to cope with your situation and how did you make the decisions that you did because my boyfriend and i are so confused right now on what is right to do?!?!?!? thankyou!
oh sorry..i forgot something...when we first found out about the hygroma the doctor told us that it was 1 cm which im guessing would be 10mm?? and were not sure if it has went down any..stayed the same...or gotten bigger! when we got the first amnio done we asked if how it looked and he was whispering something by the computer and we think he said it looked like it recessed (sp?) a little bit..but were not sure and when he came back to us all he said was well its still there...so im very confused and it took till our 20 wk ultrasound for me to actually see it...which might not be good..but then again maybe i knew what to look for by then....and the first couple of ultrasounds you could only see the hygroma when you looked and the baby from the side...and its still the same way now you cant see they ch till they look at the top of the head or a side view... im not sure if any of that makes a difference in anything or not..just thought i needed to tell you that...lol now im babbling :) once again thanks for everything!
Sorry it has been a while since my last post. We found out that the hygroma was a marker for twin to twin transfer syndrome. My cervix began to open due to the pressure from the the baby with the larger sac. We were told that we were headed to Miami for surgery to correct the TTTS. We needed one more ultra sound before leaving. Well they found that my cervix had opened even more. The doctors were scared to let me travel without having a cerclage in place. Tuesday night they put one in. On Wednesday morning they believed that my amniotic sac had broken. They detected a slow leak. They watched it all day Wednesday. Thursday morning there was no doubt that there had been a rupture. This made the surgery to correct the TTTS impossible. They exhausted every option available to help me. The cerclage was removed and I delivered my twin girls at 4:30 Friday morning. They lived about 5 minutes. My husband and I got to hold and love on them for the few minutes they were here. I was a mama for a short while. It was a very peaceful beautiful moment. It has been a painful week. We are managing to get through. Thank you for the support that you gave me!
There are no words. I am so so so deeply sorry for your loss. I just can't even begin to imagine the pain you are feeling. You and your sweet angels will be in my thoughts always. Your strength is astounding. Take care of yourself momma. All my love and hugs sent your way.
I am glad that Megan is helping you find some resources. I have never heard that a baby with hydrops has a 50% survival chance. I thought hydrops was 100% fatal. That is great news that they have better odds now. I will try to answer any questions you have as well. My baby had a CH with no hydrops and I was given about a 20% chance that things would be ok. She ended up perfect. I measured big the whole pregnancy too. I also gained 60 lbs and had a 10 lb baby. Is the baby measuring big as well? I was told that babies with chromosomal abnormalities were usually smaller than normal so a big baby might be a good sign. I thought a fetal echo was pretty standard with a CH even if things look ok since heart defects can be related to a CH. I thought I was the only one who had 2 amnios. I feel for you. I know how uncomfortable those are. I had a 2nd because we did my first one too early and the placenta tented so they couldn't get fluid. I am surprised you had a 2nd one. I will keep you in my prayers. Please keep us posted and ask any questions you have. We are here for you.
Sorry its been so long since my last post but as im sure u all may have suspected by now, things didnt end up so great. i lost the baby at 19 weeks. i had a lot of emotions i just couldnt deal with. it took all the energy i had just to try and make it thru the holidays. On new years i actually felt the weight of the horrible last year being lifted from my shoulders. I am finally able to speak her name without breaking down (most of the time). Ava may not be here but she is certainly in my heart.
-On to some good news. I found out on Monday that i am pregnant. (well i knew before then. My fiance came to kiss me goodbye one morning before he left for work and the smell of his cologne which i normally love sent me into a full on gagging fit) And while i am beyond thrilled i am also terrified beyond belief. Im sure u remember how horrible an experience i had with the doctors at the hospital last time. So today i looked up every OB/GYN in my area that is not affiliated with that horror of a hospital. I found one 3 blocks from my home. I called and explained my story. The angel of a receptionist on the other end told me i can come in today!! not only that but she gave me an appt time that will allow my fiance to come with me (without me asking for that time). So far things are going much better than the last time. But i am still terrified something is going to be wrong again. I googled all the articles on Turners Syndrome again just so i can read the line where it says "happens randomly" and "does not carry a recurrence risk". But i am still panicked!!
-i dont know about your spiritual or religious beliefs. I myself was raised Roman Catholic but i consider myself to be much more spiritual. A few months after losing Ava in July, my fiance and i decided we would like to try again. i said to him i would love to be pregnant by Christmas. figuring it would ease the pain of the holiday as well as the day that i had been due. When i realized i might be pregnant last week, i counted back to see when this miracle mght have been conceived. December 25!!... in my heart i feel that maybe its a sign that it was meant to be. a sign that everything is going to be ok this time.
But i am still so worried...
thank god for these message boards because im sure id go insane if i was unable to get all my thoughts and worries out of my head.
I wilk keep you posted as soon as i kno anything..or am far along enuf to have any tests done (please God, anything but another amnio!)
Thanks for listening
I am so sorry to hear about your loss of Ava and all that you have gone through. At least you have some exciting news now. What a great Christmas present for you. I am sure everything will be fine with this baby. Keep us posted.
Oh I am so terribly sorry. Maybe it's naive, but when I don't hear updates I sometimes tell myself that everything turned out alright. I so wish that had been the case for you. Nevertheless, sweet little Ava will be in my thoughts tonight.
I am thrilled for you and your new little bean! I can only imagine your anxiety about this pregnancy. My husband and I have decided not to have any more children simply because we just can't go through what we went through with our daughter. Even though everything turned out well, the experience was complete agony. So with your situation, I'm sure you're a nervous wreck. I am however so incredibly relieved that you seemed to have found a doctor that will treat you and your babe with the respect and care you deserve. The odds of this little one having Turners is slim to none (but I'm sure you've researched all the stats :) ). So rest easy love because I just know that this little one will be born happy and healthy. Until then, I'll be sending all my strength your way. The strength to grieve for your baby girl and the strength to get through this pregnancy with your nerves in tact. Please post on here when you can. I've been slacking lately, but I'll be checking in daily from now on:) Take care of yourself and that itty bitty miracle!!
ok so i saw the doc last week....they were backed up so they decided to take me in for a sono before i saw the doc....the sono tech wasnt seeing anything on the screen so i started freaking out (of course)..she reassured me saying i was only almost 5 weeks so the sac is still too small for them to see..that didnt help...i cried when she left the room for me to get dressed..they then brought me into docs office to meet the doc and be examined...i continued to cry on and off..the doctor came in and when he saw my bloodshot eyes said "i wouldnt expect to see anything just yet. you just found out youre pregnant. when u come back in 2 weeks for a sono, well be able to see something"...i was just thinking "here we go again"...he told me hes affiliated with 3 hospitals (none of which are the hellhole from last time)...he is going to send me to a perinatologist after my next visit...i have no problem with that..in fact i want every doc that can help involved lol...he also told me that the perinatologist will most likely make me do the amnio and all that fun stuff all over again...unless of course this time the placenta attaches somewhere where they can reach it by CVS test....im 6 weeks today...im eating so healthily its disgusting..taking my vitamins..drinking my recommended amount of water..so i kno im not doing anything wrong...yet im quietly panicking...sono on Feb 2...next prenatal vist Feb 11...maybe this time ill actually get a sono pic of my baby...pray for me ladies....
ok so i had sonogram on Tuesday...everything looks good...nice strong heartbeat (139 bpm)...the placenta looks good...baby even looks like it attached to a better spot in my uterus that would probably allow them to do CVS test should the need arise...nuchal translucency March 9...staying positive
had the nuchal scan last night...measurement a little elevated...3.7 mm...my husband swears he saw it was 6 point something...the crown rump length was 6.34...the tech even said "its a LITTLE elevated" i asked how much is a little and she said its measuring 4. My husband is still convinced he saw 6..hes freaking me out even though im positive i saw the correct number bc i was watching that screen like a hawk...my doc didnt seem toooo concerned...he said compared to the last time it was a much better number...told me if i wanted to do cvs or amnio its up to me...i figured id do it bc i hate not knowing...this morning my husband tells me i shouldnt do it...its too risky...its too painful for me...and that im gonna cry again....so i told him id wait until next week when the results of the blood test are back to make my decision....ive been trying to compare everything to my previous pregnancy...last time the baby kept measuring much smaller than it should for gestational age..last nite the baby was a few days bigger than gestational age...with the last pregnancy out of all the sonos i had i only saw the babys arm move slightly once...last night in order to get the baby to flip over the tech had me cough and prodded my abdomen wit the sono transducer...this baby (once it woke up) flipped around, rolled on its side, moved its mouth, waved their little hands in front of his/her face,appeared to kick off the wall of my uterus(thats gonna be fun when i can begin to feel it!!) and when stubbornly refusing to flip onto their back, turned in such a way that its lil butt was facing the screen...i took this as a sign that this baby is healthy since it seemed to be very active and able to move around...so im not completely panicking...but every time my husband insists he saw 6 i start to think maybe i just imagined seeing the lower number and hearing the tech say "a little elevated" and "its measuring 4". so if im right and it was only a lil under 4, how panicked should i be? should i go through with the amnio? am i right in waiting until the first blood results are back before deciding? or should i be on the phone calling the perinatologist already? im staying pretty calm about the whole thing..i know its out of my hands...but my husbands thousand yard stare and semi catatonia may drive me crazy...so any advice you could give me would be greatly appreciated...
Oh my gosh I am so sorry I am just now seeing this!!! It was so slow on here, I stopped checking in every day. Never again!
Alright, well, it's very possible that your husband saw the number 6 on the screen at some point. But keep in mind, that during the nuchal scan, they have to continuously take measurements and some of the measurements they take are from an angle that can make the nuchal thickness appear thicker. Does that make sense? The numbers would keep changing as the doc got different angles. If he's telling you that it's measuring at 4, then that's what you should go by. Because that means he got a measurement of 4 when he got a hold of the correct angle. How far along are you now? 4 is above the "normal" range, but it could very possibly just be a delay. Obviously I can't tell you what you need to do, but I can tell you that if it were me, I would certainly get the amnio done. I'm the kind of person that just can't stand not knowing. I want to be prepared. I also wouldn't want to spend my pregnancy worried about it. Just keep those positive thoughts flowing. You do whatever you feel that you need to do to be content. Have they scheduled you for a follow up scan seeing as the nuchal fold was measuring 4? Hang in there momma....I know it's scary. I promise I will be checking back here every day now!
Hi everyone,I have been reading this board for a few days now, and it is one of the only things that makes me feel as if hope isn't silly. I had an ultrasound at 11 weeks(march 3rd) and a nuchal fold of 7.8mm was found. Well, we went for a CVS 6 days later,and it was still think,around 4.5mm. They attempted the CVS twice, and then told me they didn't get enough cells to test. The doctor came back in and told me that it looked "consistent" with a cystic hygroma and of course told me nothing good will come out of this. Well, 2 days later, I went for another opinion at a very good hospital,(Vanderbilt) and the best DR. I could ask for. He did a ultrasound and was going to attempt another CVS, but said it was my placenta that was in an odd place and the previous DR. should have never even risked it. Well, I am scheduled for another ultrasound April 6th, (I'll be 15w6d), and an amnio. This Dr. was so great, he never mentioned termination and just looked at me and said "please try and enjoy the next few weeks,sometimes these things resolve themselves and everything is fine." He couldn't diagnose a for sure hygroma because the baby wouldn't be still long enough..but it is and always has measured 3 or 4 days bigger and he said that is good. I am just so nervous and have spent so much time crying my heart out and finding this board gave me so much more hope than I'd had before. The good, and the bad...I don't feel so alone in this 'rare' thing.
I am so so so glad you found this thread. It's got such a mix of stories and the hope is definitely in there. My daughter had a 6mm CH at 11 weeks gestation. She is now a perfectly healthy little girl....we just celebrated her 2nd birthday:) Of course, this could end badly. But hoping that it won't certainly isn't silly. As a matter of a fact, I think hoping is the most productive thing you can do for your baby at this point. The waiting will be agony. The wait for the amnio, the wait for the results....all of it. Just take one obstacle at a time. The CH is obviously showing signs of shrinking, that's always a little ray of hope in itself. It could be nothing more than a delay in the connection of his/her systems and once that connection is made, the fluid will go to it's appropriate places in the body. Either way, I will definitely be thinking about you on April 6th!! I'll be hoping for nothing but good news for you and your sweet little one. If there is anything I can do to make this at all easier on you, you just let me know. Lots of love and strength sent your way!!!!
Thank you for the reponse. I went to my dr today to check the heartbeat and it was a strong 150 bpm. That alone was a relief because of course after all of this, all you expect is bad news. I am praying like crazy for a healthy baby and a good outcome like yours. I will update on the amnio and ultrasound. Oh and one more thing... I have yet to read anything about genetic counslers having anything positive to say... Did you see one and how did it go? Thanks so much for the support!
I didn't ever see a genetic counselor. It was recommended, but I declined. I've heard maybe one or two stories in which a genetic counselor had been optimistic and positive. It just wasn't worth it to me. I wanted to hear what the doctors had to say and make my own decision. With that said, my perinatologist did recommend termination right off the bat. But when I told him that wasn't an option at that point and wouldn't even be considered until I knew more, he respected that and never mentioned it again. Obviously, it's entirely up to you, but I chose not to see one simply because I didn't feel that I needed to be told that my child wouldn't survive...I had already heard it from the doctors. Whatever you decide to do, just know that your baby has a chance. It might not be a great chance, but it's a chance nonetheless and that warrents hope that shouldn't be taken away by anyone. Keep your head up momma! And please keep me posted!!
Well, my boyfriend and I both decided yesterday to cancel the appt with the G.C. because like you said, the doctors have told us what they think and what need is there for someone else to break our hearts..? I will be sure to update about the baby's hygroma and if it is worse or better on Tuesday... :-S
jus came back from my doctor visit...the sono reports were in as well as the 1st trimester blood work. Sono results said "cystic hygroma findings measuring 4.3mm". it said it went to lumbar spine and had septations. now im a little annoyed bc i thought i told that sono tech to tell me everything she saw and not to sugarcoat it for me. The bloodwork came back normal for the trisomies but i have an increased risk of down syndrome (1 in 7). doctor told me to call perinatologist right away. Called but they had already left for day so i left a message with my whole story and why i am freaking out. As soon as the doctor said the results were abnormal i decided id do the amnio. I, like you, can not go without knowing. They took my blood for the 2nd trimester quad screen bc i am now 17 wks 4 days along. last time my pregnancy ended at 19 weeks so i was panicked enough as it was as i got closer to the 19 week mark. I just dont know how panicked i should be. Should i be very panicked bc this is the 2nd pregnancy in a row where things werent completely normal? should i be a little less panicked bc the hygroma is only 4.3mm when last time it was 12mm? i dont kno what to do with myself. my husband is no better. he just shuts down when he hears news like this. At just 24 years old im starting to think "am i not supposed to have kids?"...when i was little and my cousins and i would talk about what were gonna be when we would get older i always said a mommy. in my times of doubt i start to think is this going to be the great irony of my life? all i want is to be pregnant and be surrounded by lots of little ones. is it never going to happen? i somehow managed to muster all the strength i never knew i had last time. i really dont think i can go through all of that again. i dont WANT to go through all of that again. waiting not so patiently for the perinatologist to call me back. hopefully tomorrow so i can get an appointment for this coming monday..ill keep you updated
A million congratulations!!!!!! One HUGE hurdle out of the way! That's just wonderful news! Please keep me posted! I'm just getting on here for the first time in over a week because my family and I relocated so I've been without internet. But I've got it now and will be checking daily for updates!
Oh honey...there are a thousand things I want to address here. I'm going to put my kiddos to bed and then sit down and try and type out the thousand things I want to say :) I just don't want you to check this and think that I didn't reply to you.
Okay, so first of all...the sono findings. I'm sorry the tech wasn't straight with you...they usually aren't. They usually allow the doctor to deliver the news. How far along were you when it measured 12mm?? Did they actually give you that measurement? I don't remember ever seeing that number in your posts. The fact that it's shrinking CAN be a good sign, but it doesn't necessarily mean that there's not something chromosonally wrong. As for septations...that's not good news either. BUT my daughter also had a septated CH and turned out perfectly healthy. The odds for a "normal" baby are significantly lower when there are septations in the CH, but those are the same odds that my daughter faced....so don't let that discourage you too much. As for your blood work....I can't say for certain how accurate those are, but I do know that there is a ridiculously high chance of false positives invovled with them. My peri told me flat out not to waste my time getting the blood screening done. So that alone, I'd take with a grain of salt. I understand your panic....I promise I do. And I wish there was something I could tell you to ease that, but I know there's not. I will tell you this though, from my point of view, you're already a mother. Only a mother would have the feelings that you're having about this child. I can't even begin to imagine how terrifying it must be to be going through this....again. My husband and I decided not to have any more children after what we went through with my daughter. But we've already been fortunate to have 2 healthy children and I don't want to push my luck. So to say I admire your strength would be an understatement. Also, your husband sounds like he's responding exactly like mine did. My husband completely shut down after the first piece of "not so good" news that we heard at each and every appt. He shut down so much that he never even heard the doctor tell us that we were having a baby girl....he had no idea. I started talking about the fact that she was a girl on our way home from the appt and he had no idea what I was talking about. Then there was me. I hung on every single word that came out of every doctor's mouth....every single word. Then I would go home and research every single one of those words that I didn't know the exact meaning of. Please let me know when they schedule your amnio. If there is anything I can do, or any questions I can help you find the answer for please please please let me know. I'm more than happy to do anything in my power to help. I know this is hard, and I know you're in tremendous amounts of pain right now, but do whatever you can to find little bits of relaxation from time to time. Again, if you need anything....or even just need to vent, don't hesitate to message me. XOXO Megan
ok it was 12 mm in the last pregnancy...they didnt give me the measurement then either i saw it on the screen....in the last pregnancy it was 12 mm in week 13...this pregnancy i was 12weeks and a few days and it measured 4.3mm...so its significantly smaller than the hygroma in the last pregnancy...im just comparing everything to the last pregnancy bc in that pregnancy everything seemed to go wrong (the placenta had something wrong with it, the fluid started accumulating in other places in babies body, i believe they called it ascites,the baby only had 2 chambers in her heart instead of 4, kidneys were malformed, then i had not enough amniotic fluid, began to show signs of preeclampsia)....im not too concerned about the blood either..my doc said he wouldnt be concerned about it if my sono had been normal, its just the combination of the 2 that has him concerned...i have my amnio next monday April 26th and then the level 2 sono on may 6th...im looking forward to getting it over with...i just wanna know already...although im assuming that since so far things are nowhere near as bad as the last pregnancy that if there is something wrong it cant possibly be as devastating or fatal as in the last pregnancy...on a positive note ive been able to feel the baby move for the past few days now and im absolutely loving it...cant wait to get the amnio and sono out of the way so i can have some information bc i too am the "go home and google it" type lol...ill keep you posted as soon as i get some info from these doctors
Ohhhhhh my goodness. I had no idea your last pregnancy had that many complications...wow. I don't blame you one bit for comparing the two pregnancies.....I'd do the exact same thing. I'm not sure how you wouldn't. So maybe....just maybe....this baby's CH is nothing but a fluke :) Either way, I'll be thinking about you. Especially on the 26th. I remember so well how torturous it was to wait so much. Keep me posted!
ok so today i went to my regular OBs office just to pick up my referral and blookdwork and sono reports so i can bring them with me when i go to the hospital. I have the quad screen results. This is where i need your knowledge. The bloodwork looks good..actually great. It says my risk of down syndrome is 1:1510. And the screen for spina bifida and trisomy 18 is negative!! On the 1st trimester blood they told me my risk of downs was 1:7. ...Now that this says 1:1510 does that mean that its more likely that everything will b ok? How accurate is this bloodtest? Im wondering if they are going to go by the 1st trimester bloodwork or the 2nd trimester quad screen. it seems more likely theyd go by the more recent bloodwork no?
also on the report from the nuchal scan it is worded as "increased cystic hygroma findings". but then in the more in depth part it says "an increased nuchal fold was noted measuring 4.3mm with septations and fluid extends to the lumbar spine". also says "the nt value is 4.2mm". and it also says that the limited anatomy they can see is within normal limits. (excited about that last part since last pregnancy they saw problems everywhere)...so based on how it was worded is it a cystic hygroma? or are they just considering it an increased nuchal fold? also based on the bloodwork, does it seem likely that maybe the fluid went away and that is why the bloodwork is showing such an improvement? im going to google as much as i can so i have a better idea of what these results mean and so i can be prepared with my list of questions for the genetic counselor on monday. thanks
Well, as far as the bloodwork, I'm just not sure. I've known several women who have had abnormal test results and gone on to deliver healthy babies. I, personally, would assume that the second test would be more accurate...but I'd have to do a little more research to be certain. I'll see what I can dig up tonight. As for the CH....yes. It sounds to me like it is indeed a cystic hygroma. Only because they used the word, "septations." That is enough to classify the fluid as a cystic hygroma. If it was just nuchal fold thickness, there would be no septations. I'm not sure about the fluid effecting the bloodwork either. Those bloodscreens only tests for certain substances in YOUR bloodstream, so I don't think the baby's fluid would effect the results. Of course I could be way off, but that's just what I would think. I'm so anxious for them to get another look at that baby. At this point in your pregnancy, even before the anatomy scan, your peri should be able to get a good look at his/her physical features and a good look at the organs that are usually not working correctly if there is something additionally wrong. Even at 14-15 weeks, my peri was able to look at my daughter and see that her heart appeared to be fine and her kidneys were functioning properly. He also did a 4-d ultrasound to get a better look at her facial features. I'm going to do a little more research on the quad screen test and if I find anything helpful I will certainly let you know!
what an ordeal..met with genetic counselor she was very nice...when they finally call me in to meet with doc they tell me theres a problem with my insurance..i had gone down to the insurance office to straighten this problem out 2 weeks ago..they are telling me my insurance is coming up as inactive..mind you the reason they cancelled my insurance is because of a mistake on THEIR END!!!!...so i walk into the exam room and the 1st thing the doc says to me is "Amanda you have no insurance!!"...i explain how i went n straightened it out n they assured me i was still able to see doctor...so he goes "ok well anyway u kno this is a VERY ABNORMAL pregnancy dont u? like u kno its going to be turners again right? and before u even think about trying again u HAVE TO be genetically tested"...so im sitting there and i said "i was led to believe last pregnancy and from everything i read online (and the genetic counselor had also told me minutes before) that Turners syndrome happens sporadically and doesnt really carry a recurrence risk"...to which he replies "yea well im telling you its going to be turners" and then he tells me how hell do the amnio if im willing to pay the thousands of dollars that its going to cost. They didnt want to listen to me as i explained that medicaid will pay for any bill incurred within the 30 days before ur insurance becomes active. I called the insurance company right after i left to let them kno that now they are really interfering with my medical care as i am a high risk pregnancy and really do need to have the amnio. They told me that because i am pregnant it only takes 30 days to activate the insurance instead of the usual 45. My mother told me she also had heard that medicaid covers 30 days prior to it becoming active. she told me to get online and look it up because if i have it black in white in front of me how are they going to argue with that? i came home and looked it up. not only am i entitled to prenatal care as well as specialists while i wait for the insurance to become active, medicaid has retroactive coverage for 90!!! days before it becomes active...and the doctors office has to kno this..they just wanted me to come out of pocket for thousands of dollars..they rescheduled my appt for the amnio for next monday..im calling them tomorrow to let them kno what i found out from medicaid and inform them how i have the printouts stating what i just said from not only medicaid but from the new york state dept of health!! id like to see them argue with that!!..my husband does not want to go back to that doc because he seemed like he only cared about the $$ and because he was just so insensitive...he hadnt done the sono so how would he be able to say its just as bad as the last pregnancy?!...last pregnancy almost every organ had something wrong with it..all the sonos i have had so far this pregnancy state that the anatomy they can see all looks normal...my husband wants me to call the peri that my OB originally recommended..when i had first called 2 weeks ago they were on vacation and by the time they called me back i had already given in and called this doc and tehy were going to give me an appt for today as well so i figured i was better off just leaving the appt i already had...so now if i call YET ANOTHER DOC tomorrow im going to have to explain the insurance situation and how although the doc did reschedule the amnio i would really prefer to not go back there seeing as he was just so cold and rude(not as horrible as the peri from the last pregnancy but come on! cant i just get a nice doctor for once?)...i wanted to scream...i really felt forced into having to terminate last pregnancy and this time i WILL NOT even consider it...i feel the baby move all the time every day and theres just no way i could do it..not to mention i still feel a lot of guilt over the last pregnancy even though the situation was really out of control, it was putting My life on the line..also compared to the size of the hygroma in the last pregnancy (12mm compared to 4.3mm this time) i really dont see how it could be something fatal thats wrong..and if god forbid it did turn out to be something fatal, whats gonna happen is gonna happen, why would i terminate? it would all happen in its own time...so its making me wonder if i should just wait until after i have the level 2 sono to have the amnio..my level 2 is scheduled for next thurs may 6th..if i have to call a new doc to schedule an amnio i assume i wouldnt be able to get an appt before then anyway...my husband feels if im not going to terminate why even bother to put myself thru the pain of the amnio again..he even joked that if when they do the sono before the amnio, if it all looked good he was going to throw me over his shoulder and run away with me...i was so prepared to do the amnio but the insensitive doc and the insurance issue and now the waiting yet again is really startin to shake my resolve..and my confidence...i really felt it was all gonna be ok..it couldnt be anywhere near as bad as last time but all these so called experts are trying to tell me im wrong! i really dont get it...i just want SOMEONE to have SOMETHING positive to say...they are really sucking all the enjoyment out of my pregnancy...and what i really didnt like was when he said "before u even think of trying again..."......try again?? im still pregnant now u jerk!!!!...i really have had it with doctors..we go to them when we are going thru such a difficult period and they cant even manage a kind word...i plan on spending the day tomorrow on the phone..first with 311 (ny state helpline) to file a complaint about the medicaid office, then to the doc i saw today to explain what i found out (even though im sure they already knew medicaids policies seeing as they deal with insurance more often than i do) and then to yet another perinatologist to see when they can see me..no sense in stressing..juss gon do wat i gotta do and hope that the 3rd times the charm wit these doctors...thanks for listening
Oh my gosh....how incredibly frustrating!!!!! With everything going on, insurance technicalities should not be something you need to worry about. Wow. I would have lost my cool. I definitely agree, find a new doctor. There is absolutely NO reason for anyone to be so cold and insensitive. No reason at all. I was so so lucky. My OB is a family friend, so he cared about me and my daughter. He made sure that I saw the best peri in the area. My peri was definitely a little more harsh than my OB, but he had to be. He "recommended" termination at my first visit, but when I told him that termination was not an option at that point, he left it alone and never brought it up again. The way I see it, they can do their job, give you accurate information, and still have a little tact while doing it. You NEED to be 100% comfortable and confident with the care you and your child are receiving. This kind of thing makes me furious. It reminds me of Bianca. She posted on here awhile back and has since become a very dear friend of mine. But the way she was treated by medical professionals had me 2 seconds away from getting on a plane to Ohio. I am so sorry you're having to deal with this....on top of everything else. It's ridiculous. I suppose May 6th isn't very far away, and you're right, you probably wouldn't be able to get an appt for an amnio before then anyway. I understand that it might seem pointless to get an amnio even though you've decided not to terminate, but for me it was more about preparation than anything else. Financial preparation as well as emotional preparation if indeed my daughter would be born with special needs.
Thank you so much for taking the time to update. I wonder about you and that babe every day. I'll be anxiously awaiting the 6th and crossing my fingers for good news!!! Take care momma!
I just wanted to know if any of you ladies who have or are going through this had ever been told that this could be a sign of a neural tube defect? Just as everything starts getting better, my regular doctor brings this up (although U/S was good except a thicker neck/extra skin). I just can't be stress free for long. Help anyone? Thank you.
I hope someone else has more insight than I do. I was never told anything about neural tube defects. Aren't most neural tube defects detectable via ultrasound? I know spina bifida is. And I would think that anecephaly would be detectable as well seeing as the brain doesn't form when that is present. I did a little research after I saw this post and I haven't come across anything yet that relates these defects to CH. The closest thing I found was hydrocephalus forming, but that is cerebralspinal fluid that accumulates in the brain, not fluid from the lymphatic system. I'll keep looking for more info. Is that all he said about it? I mean, did he not get into specifics? One would think that if a doctor was going to present such a grim possibility (not that all neural tube defects are as grim as others) that he would elaborate a little more. Hopefully someone on here has a more knowledge on the subject than I do. I'll keep looking though!
I talked to the genetic counselor I ended up seeing, and she said that these two aren't related and my doctor must just be throwing things in the air now... and that the only SB usually not detected by U/S is tiny pin hole size lesions.. I am just going to relax. We go back to the peri next month for another anatomy scan and every month there after. My echo is Thursday the 6th, and I am keeping my fingers crossed that it comes back good, since the two level II scans of the heart have:-D Thank you for replying, and I will keep in touch.
had my 20 week ultrasound yesterday...the sono tech told me it all looks good!!! he said it was one of the best looking hearts he had seen all day...he showed me all 4 chambers several times and he said he could see the septum that divides the chambers and was even able to see the aorta which usually isnt visible until 25 weeks...that the spine was spectacular...he said the anatomy was remarkable and if i didnt believe him he would show me pics of another 20 week ultrasound for me to compare for myself lol...no fluid in the neck...i asked at the end again about the hygroma and he said "did u see it?" i said no but i dont kno what im looking for..he showed me his printout of the back of the babys neck and said see no cysts!!..he also told me that im paranoid..bc i was basically holding my breath the entire time asking if each thing he looked at was ok...i have plenty of amniotic fluid and my placenta looks perfect..i told him he is my new best friend..when i had my dr visit he told me i should still consider the amnio just bc of my history, and the 1st trimester screening i could be that 1 in 7..i would really prefer to not do the amnio just bc of the risk of miscarriage..i really dont wanna tempt fate.and my husband and i both feel that we can handle whatever we are given..seeing as all the anatomy is good this time we kno that if something is wrong it wont b as severe as all of the complications we had last pregnancy...still kinda paranoid but feeling much more relaxed than i have been :)
That's what I'm talkin about!!!!!! Good baby!!! I'm absolutely THRILLED for you! Looks like you've got yourself a miracle baby :) A million congratulations! Your post just made my day. Keep me posted! I can't wait to hear of his/her safe arrival!!!
Good here!! Just had another U/S Monday (27 weeks), and everything looks good. She is still measuring a little over a week ahead and they just don't mention the CH anymore (they want me to relax). Now I am just ready for September!!!! How about everyone else???
I am new to this message board and am so glad I found you. I was diagnosed last Monday with a Cystic Hygroma. I was 12 weeks 1 day and was told that it was only in the neck area. I went back to the doctor last Thursday as I had a bad feeling and felt like I may have lost the baby.
They told me to come in and they did an ultrasound. My sister, who is a nurse, went with me and when the sonographer told us the hygroma was from the top of the head all the way down the babies spine.....she asked for the doctor to come in and help explain. He did and he is a wonderful doctor (he is a high risk neonatologist and just delivered my sisters twins).....but did not give me much hope. We go back on the 9th for another ultrasound and then an Amnio the week or so following. I opted for the Amnio instead of the CVS....since we will not do anything to terminate this pregnancy. God created life and we will let him end life. I am so distraught with worry and cannot cope with this. I have not been told any "size" of the hygroma and that concerns me. I have been reading everything online and feel so overwhelmed....yet so completely hopeless. I know I have to be strong and think positive...but it is so hard right now.
First things first......this is NOT hopeless. I promise you that! At 11 weeks and 5 days, my daughter's CH went from the top of her head all the way down her spine....just like your baby's. She is now a perfectly healthy 2 1/2 year old....so there is certainly hope :) We all know how scary this road is that you're on. I won't tell you that everything will be fine and your baby will surely survive. But I will tell you that you MUST hang onto that little bit of hope. Take the time and read the posts on this thread. There are SO many success stories! When you go in on the 9th, make sure you ask how big the CH is....that will give you a leg to stand on. Also ask if it's septated or non septated. Ask them if it has shrunk in size since your last u/s. Ask if there is any indication of fluid anywhere else in the baby's body. All of these questions will give a basic foundation for what you're dealing with. Many doctors have a very grim outlook on a cystic hygroma (rightfully so). But what they don't (as a whole) hear are the numerous stories we have on here where a healthy baby is born at the end of all of this. Chin up momma. You'll get through this. Just give that little babe of yours a chance to heal his/her self. Meanwhile, if you need anything at all, please please let me know. We've all been where you are and will welcome with open arms any questions or frustrations you might have. You're little one is in my thoughts today. I hope with every ounce of my being that your story ends like mine. Again, if you need any information or anything at all, don't hesitate for even a second to ask!
We had our normal NST on Monday morning, and I had mentioned to my doctor that the baby was not moving hardly since the middle of the night. Well, on the monitor her heart was beating at 190BPM steady, with no movement. They sent me straight downtown to L&D for an ultrasound, which determined we had no amniotic fluid left hardly. I was induced and 7 hours later had my beautiful, HEALTHY, baby girl. After such a worrisome pregnancy, I am glad it is over. We got to come home after the normal 2days!! She was 5lbs4oz & 18 in long.
She was premature, at 34.5 weeks and has the extra skin on her neck, but otherwise is completely healthy!! Everyone hang in there because miracles happen!!
Ohhhhhh my goodness I about had a heart attack reading your post!!!! I am so relieved she is here and she is healthy!!!! I couldn't be happier for you! Now get ready, because if her personality out of the womb is anything like it was in the womb, she's gonna keep you on your toes! I know mine sure does :) Congratulation love! I'm just thrilled for you!!
hey i havent been on in a while but i just wanted to let you and everyone else know that on September 17th at 5:20 pm i gave birth to a perfectly healthy and absolutely gorgeous little boy!! Vincent Joseph weighed in at 9 lbs 5 oz!!!!! and 21 inches long. after months of wondering if he would be ok hes here and hes perfect!...i wish i could post a pic so u could see just how beautiful he is
when i have some more time ill post my very long and unbelieveable birth story (i was induced twice!)
stay strong everyone bc MIRACLES DO HAPPEN!! Vincent Joseph is living proof of that!
Oh what wonderful news!!!!!!!!! A million congratulations on the birth of your beautiful, HEALTHY boy! I'm just so thrilled for you! I'm so so so happy to add him to the list of miracles! Yet another story of hope. Thank you so much for the update....I live for posts like this :) Congratulations again momma! Give sweet Vincent a big squeeze for me!!!
Hi ! does anyone still post here? i'm 27, married, have a 3 year old daughter,and i am 14 weeks pregnant with a little angel that has a 7.6 hygroma. Its on the back of the head down to the tail bone. of course we are keeping it. praying for a miracle. Meagan, your stories is similar and very encouraging. i am also negative rhogan negative. ive done research on CH and my blood type. my husband is A neg also. my original ob said i didnt need a rhogam shot seeing that my husband is A neg. but through my research i found out that a A neg and a A neg can make either a A neg or O neg. O neg i dont beleive is compatible with A neg. confusing. but i came accross a web site that said if there is no shot with a blood type like mine, it could result in fluid buid up in the fetus and possible death.CH. what do you think? did you have the shot with your lil girl?
i wish someone would post here. i read all the blogs and i feel like i know everyone of u. i talked to my ob about my blood type. he said its not relevent in my case but did agree with me. ch can be caused by rh incompatibilty.
neways. i have a amnio feb 1st. it feels like its forever away. starting to feel the baby moving alot stronger, but still very worried. i hate that i have to wait so long. i know its in the Lords hands. to all the mothers who had good outcomes CONGRATS!
Please accept my apology. I don't check this thread nearly as often as I should. But I'm here now. You will find so many different "causes" of CH. But it has been my experience that this condition has no limitations. It can, and does, effect people of all sorts. I have also read about the Rhogam incompatibility but was never given that as an actual cause for the condition. So it's entirely possible. I did have a Rhogam shot with both of my children. I was under the impression that it didn't have anything to do with my husband's blood type, just mine. But I will research that further today. I'm A neg if that helps you at all. The rhogam shot is fairly common practice, so I'm sure if your OB says you don't need it, you probably don't. But like I said, I'll do a little research today and see if I can come up with any good information for you.
I know Feb 1st seems like a million years away. Oh I remember that feeling! I felt like all I did was wait. If I wasn't waiting for a test, I was waiting for the results of that test. Just hang in there, stay positive. Easier said than done I know. But you've taken the time to read these stories and there are a lot of positive outcomes and I hope you can find some comfort in that :) I'm so glad you found this thread and now that I know you're on here, I will be checking back daily. I'm so sorry it took me so long to see your post and get back to you. If you have any questions at all, please don't hesitate to message me. We all know what you're going through and how agonizing it is. Take care momma, best of luck on the 1st. I will certainly have you and your sweet babe in my thoughts that day!
Okay...I reread your post and I misunderstood. You were talking about what blood type your baby would be because of the combination of you and your husband's blood type. Duh! Ignore what I said about my husband's blood type :) You said you have a 3 year old daughter....did you have the shot with her?
Yay! i was so glad to see your post! i started bloging on another thread that was very active, but no one posted after me for days! i started to feel like i was cursed!! haha!
n-e-ways. i did alot more research about rh incompatibility.
my 3 year old is from my first marriage. my x husband was o+ so i had to get the shot with her and a misscarriage before her. my current husband is a- so i don't need the shot. i just thought it was very interesting that ch was mentioned in rh incompatibility. i think alot more reasearch should be done. along with ch!
man! the research on ch is horrible. they need to study more about the outcomes. blogs like this proves its not all doom. research is so negative. my ob and specialist suggested terminating right of the bat. sad. really puts your hopes up. i started reasearching right away of course, and was so scared until i found this thread. what a blessing.
well. i have a regular ob visit tomorrow. i asked him if he's going to do an ultrasound and he said no. how often did you have ultrasounds done? and shouldnt they refer you to a high risk doctor? i really was wanting another ultrasound. but i see the speacialist next week anyway.
Yes Yes Yes. The research that you can find on the internet is in desperate need of an update. Some of the studies I have read were done upwards of 15 years ago. Since I have started posting on this thread, I am CONVINCED that the statistics are incorrect. I've even talked to a woman whose baby had HYDROPS and survived. Unreal. I read over and over again that hydrops were 100% fatal. As for ultrasounds, I only had them when I went to the specialist. Obviously my OB did one when he diagnosed the CH, and then one when I was in my 8th month because my specialist had detected polyhydromnios. With the peri, I had an u/s at 15 weeks, then again at 16 weeks when I had my amnio. Then another when I had the fetal echo done at 22 weeks....then at 26 or 28 weeks....and then another at 31 or 32 weeks. It's all becoming a little fuzzy for me now. Of course if it had been up to me I would have had an u/s every day! And yes, my specialist recommended termination at my first visit. My OB didn't...but that may have had something to do with the fact that he is a friend of the family (I lucked out with that). But once I told my peri that termination would not even be considered until we knew EXACTLY what we were dealing with, he backed off. From there on, my daughter's condition improved, so there was no need to discuss it any further. You just stand your ground and everything will be okay. I certainly hope you get good news next week...and I'll be crossing my fingers for normal amnio results. Please keep me posted! I keep this window open all the time on my computer now so that I don't miss another post :)
hello again.i also thought hydrops was 100% fatal until i saw some you tube videos. there is the sweetest little boy on there named kayden.
we're of course praying for the best outcome, but are ready for the worst. we're not terminating no matter what.
i hear you about wanting an ultrasound everyday. i've been considering renting one of those dopplers to hear the heart beat, but am afraid one day i won't find it. that would be awful.
i'm so glad you checked this site. it does mean alot to have someone to talk to.
Did you read on here that I rented a doppler? Not gonna lie....I did get that sinking feeling in the pit of my stomach if it took a minute to find her heartbeat. But I'm telling you, that is the ONLY thing that got me through the last half of my pregnancy. After her CH went away, her amnio and echo came back normal, I was still worried about her. I literally laid in bed every night for at least an hour and listened to her heartbeat. I couldn't go to sleep without it. With that said....there is always that chance that that fear of not finding it could come true. One of the girls on here, I believe her screen name was 'anca' rented a fetal doppler on my advice. Her and I became close and she would send me text messages with updates on her precious girl. One day I got a text from her that was slightly panicked. She said Alyviah's heart rate was very slow. Very slow. I told her to get to her doctor's office right away. She was far enough along that they very well may have delivered her daughter (she would have been extraordinarily premature though). Unfortunately by the time she was able to be examined, Alyviah had passed. But I feel like at least she was able to make a last ditch effort to save her little girl. I don't know....it's definitely a personal choice that's dependent on how you, as an individual, deal with these types of things. On a positive note, Bianca just gave birth to a perfectly healthy, beautiful baby girl in November :) I'm rambling! I'm sorry :) I just have WAY too much to say about this condition! This is my outlet. If you need to talk, I'm always here...not to sound cliche, but it's true. You can always come find me on FB too if you'd like. I've got several girls from this thread on my list as well as other mom's raising children who were born WITH their CH :) It's a little lymphatic malformation community. My name is Megan Carwin....I think I'm the only one on there!
i'd love to join your face book but i don't have one. :( so we'll just keep touch this way if you don't mind.
i went to my ob yesterday and heard the heartbeat. he said its good and strong. my 3 year old got to hear it! she was sooooo excited. Thank God it sounds strong! i'm considering looking for a doppler. i know i could buy one too. i'm gonna start looking. o, i did read that you got one when you were pregnant! thats where i got the idea!
i love reading the happy stories on here. it lifts your spirits when your feeling hopeless. i tell all my friends and loved ones to google threads like these instead of googling "cystic hygroma." its a blessing. thank you megan for keeping in touch on here. your and inspiration!!!
I'm so glad there's a strong heart in there!! Hearing that does wonders for a worried mommy's heart :) Your appt with the specialist is on the 1st right? You will certainly be in my thoughts! Keep me posted!!
hey. sorry it took me a while. not good news. :( we went to our appt and found our little one passed away nearly a week prior with hydrops. even though we knew that could happen, it was still a shock. my poor husband was so excited to see the ultrasound. he jumped up out of his seat to see the baby only to hear the tech say there's no heartbeat.that was soooo hard seeing my husband cry.
i was 17 weeks so we had to go the next day to deliver. the delivery wasn't to bad. they let me have plenty of pain meds, but man, emotional torture. we went in at 9:00 am thursday and gave birth friday morning around 3. we saw our lil tiny baby. very large hygroma. the poor little thing was so sick. i thank the Lord that He showed mercy and took our little one home. we don't know if it was a boy or girl but we sent of samples to try to find out if their was a chromosone disorder and what sex it is. the doctor thinks it might be turners. there were many things developing on time with the baby, but a few things that weren't.
but all in all, we are ok. we are handling it pretty well. talking, crying, and having peace that our baby is in perfect health in heaven where we will meat him or her one day. i really hope we can atleast find out the gender so we can name our baby.
i'm still recovering. the doc said my milk won't come in. ha. yeah right. it came only a few hours after i delivered. that hurts!!! feeling quite well today though.
last night we talked about trying again. we will. can't wait! but it will never replace our precious little baby we just said goodbye to.
Eek, so much misinformation. Just because a baby has a lymphatic malformation(the term cystic hygroma and/or lymphangioma are out dated ... -oma means tumor and it's not a tumor) doesn't mean they have any type of chromosomal abnormalities. Also those with lymphatic malformations(LMs) live very normal lives just like anyone else and I'm saying this as a person with a LM. If you want some reliable sources to look at, check out Boston Children's hospital for info on LMs or look at the Vascular Birthmark Foundation website. The National Organization for Vascular Anomalies also has some reliable info on the condition as well.
LMa are a total fluke. There is no known cause for why they occur, so to think that because one child has it, your others will, too is completely false. I've known several women who have one child with a LM and others who are completely healthy.
I don't believe anyone has ever said that a child with a CH (and yes, I do know they are called lymphatic malformations) will always have a chromosome abnormality. But there is a very high possibility of it and that cannot be disputed. Obviously not all children with it have abnormalities, mine didn't. But the bottom line is that a large percentage of them do. A CH can be an indicator of a bigger problem and there's no denying that. Yes, in most situations one can have one child with a CH/LM and others without, but if you take the time to look through this thread, there are at least 2 women who have had multiple pregnancies in which a CH was present. Of course if one is born with a LM, they CAN live completely normal lives....but that is dependent on the location of the LM. I can tell you that there is nothing normal about a child who has to endure a tracheotomy, scopes, and surgery after surgery. Or parents who have to watch their children aspirate and struggle to breathe and feed them through a tube. Their endeavors and obstacles deserve recognition. Yes, there is a lot of misinformation out there, but that is partially credited to the outdated studies and information that most normal OB's and peri's go off of. I've spent countless hours on those websites that you mentioned, but as you said, no one can predict the outcome of a CH/LM. My daughter survived it, but in the post above yours, you'll see Becky's sweet baby didn't. The point of this entire thread is to provide hope and encouragement and personal experience for those who don't have the energy to thumb through countless studies and statistics.
I was worried about you....and rightfully so it seems. My heart hurts so badly for you. I am so incredibly sorry for what you've just had to endure. I can't even begin to imagine what you must be feeling right now. Please please keep me posted on your story. How you're doing and hopefully with a name for your sweet babe. You will certainly be in my thoughts tonight. Take care of yourself. Again, my deepest most sincere condolences to you and your husband.
Hi megan. just wanted to let you know we are still waiting for the phone to ring from the lab to tell us if we had a boy or a girl and if there were any chromosones. i'm feeling so much better. engorged breast have subsided, and i had a problem with pain and to much bleeding the first week of recovery. i went to the doc and he gave me a pill to contract my uterus. it worked wonders. no more pain or bleeding. i'm glad i didn't have to have a d&c! Thank the Lord! we will try again in a few months. i have some issues to work out first. dentist visit,make sure everything is ok down there, and ect. i can't wait to try again! my husband isn't shaken a bit about our outcome of this baby. he's ready to have a twins or more! haha! although we did say if we have another miscarriage, that'll be it for us. prayfully the Lord will bless us with a healthy baby next time! This experience sure has me holding onto my little 3 year old! she's been a little trooper through all of this. she tells everyone she has a baby sister in heaven. maybe she knows something we don't! :)as soon as we find out what gender, we will let you know what we are naming the little angel.
Hey! this past thursday has been 2 weeks since we lost our baby. the doctor said the lab would call us withing 2 weeks. well they didnt call so i called my doc. his nurse picked up and said she thinks she saw something about it and put me on hold. she told me she saw the paper work when it came in and didn't know what it was so she just put it in my file.so anyways, she got the paper work out and said the test where inconclusive and they needed the doc signature to test 6 other viles that they had.the test was inconclusive because it was a byopsy of the baby. the baby was already gone, so there was nothing living to test. the doctor even told me that when i was in the hospital. he wanted to test it anyway just in case.he thought maybe we could get some results from the placenta.but for some reason only the byopsy of the baby was tested. so i told her to get him to sign it and fax it off!!!!! so now their doing fish test on the other viles, so hopefuly we will hear something real soon. i pray the others vile's are testable.
pray for me! i really want atleast to know if we had a boy or a girl!!! :(
If you look up scholarly articles on LMs, the majority of cases of them occur when there are NO chromosomal abnormalities. Most of the cases are just random flukes that happen for unknown reasons. I live with a LM myself and know what it is like to go through surgery after surgery. I have a couple friends I met online with LM as well who have been through similar experiences. We all live normal lives, just with some extra medical care. I've been through over 8 surgeries(lost count), but I'm involved in sports and am in my 3rd year at a great university. I hate when people treat the condition as a death sentence. With proper medical care, even extreme cases can be handled and dealt with. They do exit procedures for those with LMs which affect the air way, which can save the baby's life. Occasionally, more on the rare side, a baby will not make it, but that's not the majority of cases. A very important thing to have is a doctor who has experience with the condition. Dr Waner is world renowned in the area of LMs, Dr Reinisch is another amazing surgeon, etc. The most important thing for a person with LM is to have a good doctor, with plenty of experience with the condition. I think you should start a new thread with better terminology, then you can write down the info people can see in plain terms that are easily understood. Keeping the CH title can only confuse people.
Hello. i just wanted to say that i'm sure there are other threads on the whole world wide web that are for people living with LM. this thread is for pregnant women whose children are diagnosed with a cystic hygroma(or LM) whatever you perfer to call it while in the womb. i beleive all of our ob/gyn's have called it cystic hygorma. i have found this thread to be of GREAT comfort in my time of difficulty. i would have found it helpful either way if my child survived or not. if my child did survive, i would have found another thread that is for children living with ch or lm in which i would love to have talk to you about surgery's needed. There are good people here who have baby's that have passed away in utero, and people whose baby's have survived. i think u are a great help for the parents with children who have survived pregnancy with ch and are now living with it.
we're not doctors on here. we're parents dealing with are baby's in utero having been diagnosed with ch and are going through medical testing to rule out chromosone abnormalities.
Yes. I will agree with you on most all of what you've said. But like Becky said, this thread is about babies still in the womb with a CH/LM. My child, as well as most others on this thread, were given a 50-70% chance of having a chromosome abnormality. Those are the numbers...bottom line. I have NEVER treated this condition as a death sentence....never. As a matter of fact, I think I've given nothing but hope on this board. There are reasons that pregnant women take this condition seriously....because it is a serious condition. This is not just about children who are born with the condition. This is about children who have this condition in utero and can be subject to fetal demise because of the condition. I know about the exit procedure, a friend of mine delivered her son that way because of his LM. I'm also very familiar with Dr. Waner because another friend of mine takes her daughter to see him for her LM. Yet another friend of mine has watched her daughter turn gray while doctors tried to shove a tube down her throat through the swelling of her LM in order to get her breathing again. I'm not naive to the life of someone living with this condition. I have no doubt that all of these children will grow up to be wonderful, successful adults, and I have never so much as implied otherwise. If you would like to start a new thread using the term Lymphatic Malformation, then by all means. This thread was started YEARS ago and was continued by all of us who have received a cystic hygroma diagnosis. Seemingly, you're the only one who has been confused by the term. I will continue posting in this thread as I have done for the last 3 years. I want this to be a place where women who are desperate for support can come to and feel supported. Not judged and criticized for not using the correct "terminology."
Yeah. the nurse said the paper the doctor signed was permission to test the other viles. i haven't had a call yet. i made sure the nurse knew i wanted her to call me asap if she got results of any kind. i haven't called them yet since i have my follow up thursday. i'll just ask them then. How are you doing? how is your little girl? i bet your having as much fun as i am with my little 3 year old! i love her sooo much. she keeps our hands full !!! i wouldn't have it any other way!
Still no news? You're so sweet. My little girl is doing well. We just celebrated her 3rd birthday on Thursday :) She's a pistol....that's for sure. She definitely keeps me on my toes! Let me know what they tell you!
hey. so sorry it took me so long. hard to find the time to get to the computer. but anyways. we found out that we had a little girl! Emma Grace. she did have trisomy 18. or edwards syndrome. thank the Lord we got some results.
Can't wait her one sweet day in heaven!
Wow. *sigh* If nothing else, I'm glad you have some answers. What a beautiful name :) Your sweet Emma Grace will be in my thoughts tonight. How are you holding up? I imagine it's quite the roller coaster. I hope that these results brought you some closure. Love and strength sent your way momma! xoxo Megan
Hey! sorry its been a while. my little girl had pnemonia! she doing much better now.
i'm doing quite well with the news of our results. it surprised me that she had edwards syndrome. but thrilled to found out we had a sweet little girl. she is in the Lord's arms now healthy as can be. that brings us such comfort to know she is no longer suffering. we love her so dearly and we cant wait to meet her one sweet day.
i love this thread! i will keep checking in to see if anyone else needs encouragement and to let you know when we might be expecting again. we're officially trying for a few weeks now! yay! can't wait to see a positive preg test! we would love to have 2 or 3 more! Pray for us as we are praying for all of you!
I was just told yesterday that my baby have cystic hydroma. I'm 9 weeks pregnant. My OB intial send me to the specialist because of the hydrops diagnosis. I was hoping that the specialist will tell me that I have nothing to worry about that everything is going to be okay. This will be my 3rd pregnancy. My kids are 11 years old and 14 months. First pregnancy I was told my baby will have down syndrome because she was small in size the dr suggested amnio or terminating the pregnancy. I chose not to do either and If I would have listen I wouldn't have my daughter. she was born health 7lbs and 11.5 oz.
With my second I initially having a premature contraction and I had to be put on bedrest. at 4months I was diagnosed on having placenta previa. At 5 months just to follow up I was diagnosed with vaso previa. My dr referred me to a specialist and i had to get a weekly check up. After 2 visits with the specialist I was told that I dont have a vaso previa but a slight placenta previa. This was at 8 months. I was still having premature contractions but I end up carrying my baby full term born health at 8lbs 3 oz.
Before Thursday my husband and I are thinking that my OB is being cautious. After hearing all the negative informations about cystic hydroma I am lost for words. i can't even talked to my husband about it on the drive home. He is also speechless.
I've quite few posting and I realized that others their dr took time to talked to them and explained details of the diagnosis meaning the ultrasound, the sized of the cyst. My specialist didn't even showed me the ultrasound and explained why he come up with the diagnosis. On Monday I'm thinking of calling my OB and asked if she can recommend me to a different specialist. I would like a second opinion.
I am looking for some hope that everything is going to be okay. we are really excited about this pregnancy eventhough it was unexpected as all the other 2.
I will be 13 weeks pregnant tomorrow. At my 12 week nuchal translucency testing I was told that my baby has a cystic hygroma measuring 7mm. We immediately went for genetic counseling the next day and had CVS done. Results came back today positive for Turners syndrome. I have read that between the two diagnosis the prognosis is not very promising to delivering term. Any thoughts?
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