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cystic hygroma
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To Annie and others who are looking for hope- I wanted to let everyone know that after having all the scary waiting and testing that you are going through, Ashlyn Georgia was born on 8/9 and weighed in at 10.0 lbs. She is absolutely perfect and such a blessing. My doctor said her story is one to share since he said any doctor who saw her 10 wk u/s would have said her odds of surviving or being normal were very slim. I hope my story gives hope to some of you. Thank you to everyone on this post who prayed for me and gave me hope.
Congratulations, by the way on your precious (not so little!) bundle
haven't had much to post recently as nothing much is happening. I was a bit cross last week with the midwife at my doctors surgery as I went for a "between scan" check up to see if they could pick up the heartbeat yet (at 14wks) she looked sceptical and said it was unlikely she could hear it yet but she'd have a go as long as I didn't get too upset if she couldn't find it! Well, for some reason she couldn't, but you know what, I wasn't all that bothered in the end as I've bought my own doppler before I had the appointment and found it myself straight away when I got home. But I couldn't belive this trained professional had so much trouble. I'm left lately with very little faith in the people dealing with my medical care to be perfectly honest!
Saying that yes I've got my next scan a week tomorrow (1st sept) so we'll hopefully know a bit more then, be it good or bad. My husband and I are going away for a couple of days in the meantime to take our minds off things a bit, so hopefully I'll be a little more chilled when I get to the clinic..here's hoping!
Thank you so much for asking after me, I'll be sure to let you know how things go next week. Cross your fingers for us xx
I found this site after searching endlessly on the internet for information regarding cystic hygroma. During my 12 week ultrasound, my husband and I were given the crushing news that our child has a 6mm cystic hygroma. Since then, I had a CVS, which came back normal. Additionally, we discovered that this beautiful child is a girl. I have to admit, I have been so excited since finding out, but filled with so much anxiety and trepedation at the same time. We had another scan at 14 weeks, and there was no change. We were a bit deflated, but trying to remain positive and send this little girl as much love and postive energy as possible.
Our next ultrasound is at 17 weeks (9/16/08). We are hoping the hygroma has decreased in size. After that, we are having the echo on 10/10/08. The waiting has been agonizing, but I am hopeful the outcome will be a good one.
The positive nature and strong spirit of all of you is truly inspiring. I am thankful I found this site, and look forward to supporting all of you on this difficult journey.
Farrah
I am wishing you all the luck in the world with your next scan on the 16th. I am proof that good things can happen! I don't know what size my baby's hygroma was at 14wks, all I know is that between 10 & 12 weeks it doubled in size from 3.2 to 6.4, and that we were given little hope, and then by 16wks it had all disappeared, so never give up hope. Hopefully you'll have a similar outcome to mine, I have read lots of times now that the baby's lympgatic system doesn't always connect till 14+ weeks (I just wish my doc bothered to tell me that in the early days! I may have worried that little bit less!) I'll check back to see how you got on, please do let us know. My fingers and toes will all be crossed for you that day, so hang on in there xx
I am so glad that your stories sound so positive!! I will keep you ladies in my prayers and I know your little people will be just fine. Please try not to worry to much!! I know its hard but everything will be okay!
I had my 17 week ultrasound appointment today. The cystic hygroma has not decreased in size, but the baby is developing as she should. They attempted to get a look at her heart, but say that it is still a bit too early to tell. So far, everything looks alright. Our big appointment is on 10/10 where we will have the echocardiogram and Level II Ultrasound. Three and a half weeks will seem like forever, but I keep reminding myself that perhaps this is the time the baby needs to heal herself. Thank you for your support and prayers.
Deborah, the good news in your case is that after an horrific initial diagnosis it seems mistakes were made with regard to the brain & spinal cord, you must have been so worried..but if it is now just the hygroma to worry about, then rest assured it can certainly disapear by the next scan, mine was roughly the same size and it went.
I'll be checking back to see how you both get on xxxx am having trouble trying to remember everyone elses scan dates as well as my own now!!
Farrah- I'm so happy to hear that your baby is developing well. For awhile I was told that my baby was not developing well. I was told that her arms and legs were too short for her gestational age but within a few weeks, her limbs caught up with the rest of her body and she was actually "big" for her age. I know the waiting is awful. That feeling of complete helplessness is something that I never want to feel again. I'll be anxious to hear how your scan and echo go. I'll be hoping for a good heart!
I also wanted to mention something else. Even if your babies' hygromas do not resolve, it's not the end of the line. I've talked to many women who are raising children with cystic hygromas/lymphatic malformations. While it's a daily struggle, their children live full and viable lives. There are some incredible stories out there. My doctors never spoke to me about what would happen if my daughter had been born with the hygroma. Of course I'll be hoping for a completely normal outcome for you both, but I just wanted you to know that if it doesn't resolve there's still hope.
I'm thinking of you all!
Margo
Are you scheduled for a fetal echo?? That will be the next big step. You'll probably also have an anatomy scan. Basically it's just a process of elimination. Take one potential problem at a time and test for it. That's all you can do. I will say this, the more I dig and the more I research, I'm finding that there are far more "normal" outcomes with babies with CH than I EVER thought possible. The fact that your baby has normal chromosomes is HUGE! So hold onto that, continue the testing and I'll be thinking of you in the meantime:) I'll repost later today when I find out the info on the NYC hospital. Hang in there momma!
I'll be thinking of you and hoping for normal amnio results. Please keep us posted..... I'm glad you decided to share your story. Hang in there!
Margo
I will check in soon
Maureen
It is so hard sometimes to remain positive in the face of so much doom and gloom, and this forum just continues to churn out many positives in with the not-so-good. Please be sure to keep us updated, because there is so little cheerful information out there for other mums like us, that any hope we can give them that things DO turn out ok sometimes is great, I know it's what's helped keep me going over the most difficult and longest weeks of my life, knowing that others have come through it.
Best wishes, Annie
Congratulations!! Keep us posted!
I am an adult living 37 wonderful fulfilling years with Cystic Hygroma. I was diagnosed at birth and have had multiple surgeries. Despite the medical management, I have lived a typical life. I have a career, I am married and have 4 healthy CH free children. Despite all the devastating statistical information (which by the way is often not accurate) and what the doctors tell you this does not have to be a death sentence. There is a lot of life with CH. Because of threads like this and doctors offering termination as their number one recommendation I decided to start a support group on My-space. I know have over 130 families who've been touched by CH. Most are parents raising children born with CH. We also, have teens, adults and angel parents who have suffered a loss. Out of the 130+ families only about 5 have chromosomal abnormalities. I hope this post will give you all hope. If you are looking for more information and support I hope you will go to groups on My-space and search the term Cystic Hygroma to find us. I blog on my friendship page about what it's like living with CH and give a TON of resources. I look forward to meeting as many of you as possible and offering you my support and experience living as a person with CH.
Take Care All!
CJay
Danna
We are blissfully happy! Keep the faith.
A quick question for you....you mentioned that your baby's cystic hygroma resolved itself at 27 weeks...how big was it along the way? I have an early anatomy scan on Monday and we are scared to death because we know the hygroma is still there, but we don't know how much it has grown/changed. (Our high-risk OB saw it briefly on Friday's ultrasound, but said that Monday we'll see it in far more detail). Basically, the heartbeat is still strong but there are VERY, VERY GRIM with their statistics to us, and that just *****. I feel like I'm balancing hope with grief. We are also feeling the weight of having to tell people and explain all of this as my little one is starting to show!
On one exciting note, during our appointment with the high-risk OB, my eyes fell upon my records sitting on his desk between us and I caught Karyotype: 46XX---it's a girl! She is definitely a fighter!
Margo
Well first of all, congratulations on a baby girl! When my daughter was diagnosed at 14 weeks, her hygroma was 6mm. About 3 weeks later, it was down to 5mm. Then it just slowly got smaller and smaller over the next several weeks until it was completely gone. They could still see that she had a "thicker" neck, but that was just her skin that had been stretched from the CH. I'm sorry that they're giving you such grim statistics....they shouldn't be. I understand that very few of these cases turn out well, but the bottom line is that some do. You had normal CVS results and that is huge. I wish they would pay more attention to that. My doctor did the same thing though....I kept hearing, "We're not out of the woods yet." even though all the tests had good results. Have you had a fetal echo yet? I don't remember. Once you have a normal CVS or amnio and a good heart, the chances are good. Is your baby's hygroma septated? And is it only on the back of her neck? All of these things play a role in a good outcome. I know how awful it is to have to explain your situation to everyone and their dog! People want to know if it's a boy or a girl, when you're due, and what you're going to name the baby and all you're focused on is your child's survival. I hated when people asked me when I was due....I didn't want to tell them that there was a 97% chance that my baby would never make it to her due date.
I know I've said this before, but even if your baby girl's CH doesn't resolve don't loose hope. She CAN be born and live a full, viable life with a CH. You said your anatomy scan is Monday....like tomorrow Monday??? I'm anxious to hear what they say when they get a good look at it. I'm sorry this is so long! I could talk about this forever! Please keep us updated with the results....I'll be checking 12 times a day until you do:)
I honestly think that your little girl has a great shot at this....I really do. Obviously you need to remain realistic, but balancing that with a little optimism can't hurt. There is absolutely hope for your daughter....without a doubt. Hang in there doll! I'll be waiting to hear the results of your scan! Good luck to you!
I went for my feotal echo today and my consultant spent forever checking baby over, and pronounced happily that she "can't find any fault with this baby whatsoever"! Am absolutely ecstatic. She said the images she got on screen wer "textbook perfect" for how everything should look, and even called another nurse in to marvel at how clear a picture she had of all the heart chambers, all fully functioning normally. We'd been told after our 20wk anatomy scan that they didn't really expect to see anything wrong on this one, but you always sit there waiting for them to say otherwise anyway don't you? So it's another huge relief. She checked the rest of him over too, and said she's almost 100% certain now that there's nothing to worry about, and that she was completely lost as to how or why we'd had such a large CH to begin with, with no obvious cause. Am scheduled for 2 growth scans between now and delivery, just to err on the side of caution, but she said I can fully expect to have a fine healthy son at the end of all this, and to be honest now I'm just so pleased that I'm going to make it to term when the odds were so bleak that I'm going to be so happy to meet him whatever.
I'll check back in here from time to time as I love to see how everyone else is getting on, but hopefully you won't hear from me now till I report the birth in February!
Love and best wishes to all xx
Thank you so much for your support. We do not have good news. There are multiple abnormalities. The biggest factors being that the back of her skull is not there, keeping her brain from being in the right place, and a diaphragmatic hernia, which is pushing everything else in her chest to the wrong place. There are issues with her heart, kidneys, stomach, etc. Far worse than we had anticipated. We named her Abigail. We are going to let her go, probably going through a delivery since they are concerned that this is something that could happen again. Hopefully they will be able to get some answers from that process, which will allow us some peace.
Thank you again for your kindness, encouragement, and endless support. It has helped me keep hope, and will now help me grieve.
Margo
Love to you and sweet Abigail,
Megan
Please know you're in my thoughts also right now, All my love to you and your precious little girl, I'm so very very sorry xx
Annie - I am so happy for your positive outcome. I will continue to keep you and sweet little one in my thoughts.
Margo - Words cannot express my sadness for you. I will have you and your family in my thoughts and prayers. My condolences...
Megan - Thank you for the support you provide on this site. Your postive energy stretches to many places regardless of distance and circumstance.
PS....thank you for your kind words. It means the world to me:)
Your story is so heartbreaking, I know during this time that taking a breath is painful and paralyzing. Try to find some comfort in knowing that while your baby was inside you she was protected and safe and that what must happen is truly to spare her the pain and suffering. Her Journey was meant to be purely spritiual than physcial. I know none of this brings you peace right now. I can only say that I know your grief and your sadness.
May God guide you,
Istherehope
Stephanie
Megan
Stephanie
My name is Jeannie. I'm thrilled to have found this site. It's truly one of the only positive commentaries on CH that I've found yet (and I've been looking since my baby's diagnosis on Oct. 6th!).
At 12 weeks, my baby was diagnosed with a CH of 6.5mm. I had a CVS performed the next day--results came back normal (and we're having another girl--I have a 4 year old daughter already). I had a follow-up ultrasound at 15 weeks. it wasn't all that comprehensive but the high-risk OB told me that everything looks good and that the CH decreased to about 3mm and is "barely there" anymore. But he still wasn't optimistic.....he said my chances of a healthy, "normal" outcome went form 20% to 40%. I thought that my odds would get so much betetr after a normal CVS???
I decided to get a second opinion from the high-risk OBs at Columbia Unversity. That's tomorrow. So at least I'll have another OB (arguably, one who is much more qualified) take a look and give me more information. My anatomy scan isn't until 11/17 and my fetal echo is 11/25.
Seriously, if I hear one more doctor or genetics counselor spout a percentage rate at me, I'm going to barf!!!! NO ONE I come across is positive about this. My husband and I are walking around in a funk, unable to enjoy our pregnancy. I feel as though things are looking up for my baby, but it seems like the OB and genetics counselor I've met with have both been so negative. It's like it's a "policy" or something.
After reading your posts, I'm feeling more hopeful and I'm starting to think that perhaps the success rates are a tad bit higher than the 17-20% that the OBs quote.
I hope you've had the chance to read my story? My baby's CH was the same size as yours at 12 wks, and I had my next anat scan at just over 16wks by which time it had all disappeared, so it's quite possible as yours was reducing at 15wks it could be all gone by now also, fingers crossed! My CVS came back clear too, so your story so far sounds very like mine, so don't give up hope. I've pretty much been given the all clear now (am 25wks tomorrow), but I don't think you ever really relax after the initial diagnosis, you'll always wonder "what if..?" I already know I'll be checking my little one for all kinds even after he's arrived, but given that initially we were told he would probably never make it this far, I'm beyond thrilled, and I have a feeling you're going to be ok too, hang on in there, and be sure to let us know, for every positive story we post it gives hope to the many women who started out as devastated as we all did, and it's important to put our stories out there. I personally think the doc's statistics are some way off to be honest, but what do I know, I'm just a mum grateful to have beaten the odds.
Best wishes to you & your family xx
Thanks so much for your vote of confidence, it means a lot! It's amazing how similar our stories are. I hope we both beat the odds!! I will keep you posted with the details of my appointment tomorrow.
Jeannie
Megan
Just hang in there and keep talking to all these women. I think the women on here know everything there is to know about CH, but will be much more compassionate with you. This is a wonderful support group that helped me through my tough time and I am happy to help out others the same way. I have cried many tears with these women as I have read this. I consider this group to be a gift from God.
Maureen
regards also, that must be so tough
We have just recently been told my son has CH apart from a small lump on his neck he is a beautiful healthy little boy. He was born in september. This was not picked up on our scans. But he ws born with it. At first the doctors thought it was a goitre as the cyst is squashing his thyroid gland. But an MRI scan ruled it out and CH was diganosed. We are curently waiting for an Operation to remove the cyst.. (apparently we are on the urgent list) We have been left devasted by the news and are hoping that once this has been removed there will be no more cysts after surgery. Our consultant says there is a good chance he could make a full recovery and lead a normal healthy life.
Rox
Thanks so much for thinking of me! I have been sick with the world's wprst cold and haven't been online to post my news to you all.
My second opinion appointment went really well. I'm sooooo happy I went. I had an early Level II scan and an early Fetal Echo. I wound up meeting with TWO high-risk OBs purely accidentally (one did my scan/echo, and the other spoke with me afterwards at a consult), so I feel like I got a good deal of information.
The cystic hygroma is now gone. My baby's nuchal fold is 2.6mm, which they tell me is totally normal for 16 weeks. The doc who did the u/s said that if she didn't know my baby's history, she would say that the baby looks perfectly normal. Everything anatomically looks okay. The only downside was that she saw "echogenic foci" on the baby's heart (for those who are unfamiliar--these are just bright white spots on the heart--they're no big deal, really, my first daughter had them), but they made it difficult for her to evaluate a certain area within the heart. So she wasn't 100% positive that the heart is perfect but, all in all, what she was able to see gave her no cause for alarm. She said that when I have my regular fetal echo (that's in 3 weeks), the heart will have grown and then the view will be better. Then after that I had the consult with a different OB.
Everyone was really warm and caring and very upbeat. Are any of you familiar with the FASTER trial (sometimes people call it the "Malone study")? Well the 2 docs I saw were involved in the study so I am very confident that I spoke to the "experts". The second OB I saw told me that they see cystic hygromas so much more frequently now and that sometimes it's just b/c the baby's lymphatic system hasn't yet kicked in and started properly draining all the fluid. I know some of you ladies had mentioned that possibly to me, too. Unfortunatley, it's hard to be 100% sure.
Both OBs said that my chances are looking very good, probably somewhere are 70%-80% for a healthy outcome, *IF* the official Level II u/s that I have at 18 weeks (at my normal high-risk OB's place) comes back okay--which it likely will, as they found nothing of concern today--, and *IF* the definitive Fetal Echo that I have in 3 weeks comes back all clear, then my chances of a healthy baby are 95%. The general population is about 97%-98%, so that's pretty close. I am also waiting on the results of a DNA study that is looking to see if the baby has Noonan's Syndrome. But those results won't be back for a while.
I feel so much better now. For those of you who are in a similar boat as me, I hope that what I learned at my appt. lifts your spirits as well!
I'm SO happy you've been given good news, now stop copying off me! How much of a relief is it though to be told the hygroma has gone??!! I'm so pleased for you..here's hoping the rest of your pregnancy is uneventful and calm. My best wishes to you & your little one xx
And Rox, best of luck with your baby's operation. It must be fairly small if they didn't pick it up on any of your scans, so this is good news I'm sure. Hopefully they'll get it all in one go and that'll be the end of the matter. I sincerely hope so..love & best wishes to you also xx
Thank you for you kind messages. It would be great to hear from anyone else who is going through this.
I'm praying that we will have a happy ending to this, and I know it is possible for the cyst to come back.
We haven't told the rest of our family yet that he has this condition. I dont want them looking on the net and looking at the same pictures that I have seen. I just want them to take him as HE is and not what he could look like. I dont want anyone to pity him because to me, he's beautiful.
Rox
I'm sorry to hear about your daughter's diagnosis. CH is different with every child. A friend of mine is raising a little girl with a CH and she has a trach as well. It's a daily struggle for them, but she's a very happy little girl. I've never heard of ok423, but I'm glad they're examining all of your options. I know there are a few different things that can be done to potentially fix the CH itself, but sometimes there are just too many other factors that prevent them from removing it completely. And a lot of times, it just keeps coming back. What kind of hospital is she in? Do they have any specialists in this field there? I'll be thinking of your little girl. Please keep us posted on her progress. And if by some crazy chance you are from Wray, let me know because I probably know you:) Hang in there, I imagine it's very difficult to see your baby girl go through all of this!
Does anyone have any good advice for me. The specialist said it was moderate in size on the front of the neck and septated. Thank you so much...I am devastated.
I am glad that I found this site and hoping for the best.
My appt isnt until Dec 31 but my doc was not happy with that date and is trying to get one sooner so I have no idea what will conspire since I know that my doc is doing the best she can by giving me her cell phone number which doctors dont usually do!!!
Thank you all, and I will check with you later,
Briney
Thanks Megan for doing some research for me.
Tanya
"Cystic hygromas that are found in a purely anterior location on the neck are usually not related to cystic hygromas that are associated with aneuploidy and death. They have a better prognosis, and many resolve spontaneously"
From what I've read, Noonan's can be diagnosed prenatally by way of amnio. Have you been told otherwise? Even though it's not a chromosome abnormality, they should be able to identify the gene. But I could definitely be wrong about that. I've also read that most people with Noonan's have a heart defect, so hopefully your fetal echo will come back perfectly and you can cross that off the list.From what I understand, the biggest concern (once you get the all clear with all of these tests) with an anterior CH is whether or not it resolves. If it doesn't, it could cause airway problems. A friend of mine has a 2 year old daughter with an anterior CH. She has a trach and isn't able to eat the things that 2 year olds want to eat, but she's a beautiful, happy little girl nonetheless. If you research and you find any new information, let me know. I'm not familiar with cases like yours, but I really want to be. In the meantime, I'm going to continue my search:) I can't wait for some good news on the 9th! You're right, he's already made it past the dreaded 21-23 week "mark" so you have every reason to be hopeful! I'll be checking back everyday for an update! Take care momma!
I've come across that statement too about the anterior cystic hygromas which does help. Here is another paragraph I found online, it's an excerpt from the book Fetology and it states: "There is a small group of fetuses with an isolated cystic hygroma without chromosomal abnormaly, structural anomaly, or familial condition (ie Noonan's) and in which hydrops does not develop; they have an excellent prognosis. The major concern in fetuses with large cystic masses later in gestation is airway compromise at birth. The fetuses often require delivery by EXIT procedure." Another part in the book says: "The overall mortality in this group of isolated cystic hygromas is quite low. However, complete resection/removal is possible in only 75% of cases and recurrence can occur in as many as 10 to 27% of cases."
I will ask about a fast series MRI on Tuesday also because that can tell us how embedded/infiltrated the cystic mass is in other tissue(s). That is the worrisome part because if it's invaded other surrounding tissue that will be a problem and complete removal is much harder to achieve. However, I'm hoping it's just on the surface and can be removed completely.
I sure hope it's good news on the 9th...we are hoping and praying like crazy.
Thank you so much for your research and I will also share additional things that I find about the anterior cystic hygroma absent chromosomal abnormalities, hydrops, etc.
Tanya
It's a very difficult stage you're at just now, the waiting is a killer I know! I was also 10+ wks when my baby's hygroma was diagnosed and they gave me pretty much as little hope as they did you. My cvs results came back clear, and I just hit 30wks now so far so good. Your baby's fluid still has plenty of time to reabsorb, and it's beyond me why doctor's never seem to mention this, I don't know how rare it actually is for that to happen but I do know that they always seem to focus on preparing you for the worst! I also know that the facts do state that for those hygromas that DO resolve themselves and have no chromosome abnormalities, the odds are massively improved for baby and the next step then would be to rule out any heart defects.
I really hope you'll be joining the growing list of mums and babies here who are making it through this..it's a long hard road to go down, but there is always light at the end of the tunnel (sorry for the mixed metaphors there!)
Best of luck with it all, and please do post your cvs results when you get them, I'll be thinking of you.
Annie
Apologies if anyone else does and I've missed you out!
my doctor never mentioned a FISH test. he just suggested that we do the cvs right away. originally he told me it would take 10 days to get the results. i called on the 8th day, hoping they would be back early. they told me that it takes 14 days and because of thanksgiving it would definitely take that long -- and you can't count weekends either!!?? i really wish he would have mentioned something about the FISH test....at least we would know SOMETHING by now! but, this time next week, we should know everything....
the doctor did mention to us that sometimes, but not likely, the CH will resolve itself. but this was after he had told us all the gloom and doom about hydrops, abnormalities, and miscarriages! quite honestly, my head was spinning from everything he had just said that i couldn't think straight! when he asked if we had any questions, i just looked at him!
I'm just hoping my situations turns out positive!!!!!!!!
We had the echo yesterday and it looked great! The u/s also looked great as he looked at the kidneys, brain and everything again. That all looked great too! So, they are classifying this as an isolated cystic hygroma on the anterior of the neck. What I am really concerned with right now is if it is going to be embedded or wrapped around structures or vessels in the neck as the hygromas have a tendency to do that. They have complete disregard for other tissue, etc and invade if they want. The hygroma did grow in size from 2 weeks ago. He still is reluctant to tell me how big it actually is...I think he's nervous that I will go "nuts" on the internet. Megan or anyone, was your baby's hygroma able to be completely removed because it was on the surface? Does anyone have any info or personal experience from a hygroma that couldn't be completely removed because of it getting into other structures and/or tissue? Also, again he mentioned that airway obstruction is of also great concern so that is why we need to go to a different hospital out of state for this c-section. I live in Montana and while we do have excellent hospitals where I live (Billings) we don't have the specialists to deal with this situation.
We are so hopeful especially with our great information yesterday but still worried none the less. I go back on December 30th for everything again (echo and u/s) and then every 2 weeks thereafter for the same thing until I reach 36 weeks. Then I will be sent to the special hospital in another city out of state.
Our baby girl was diagnosed with a "significant" CH on the back of her neck (septated) 3 weeks ago. Since then we had a CVS and all was normal. Meanwhile, we saw the high risk OB this past Tuesday and the CH had grown so much that he no longer wants to even call it a CH, but rather an edema...or just "a lot of swelling." Nobody wants to give me a measurement, but he said it goes from the back of the head all the way down the spine.
On top of it, I am so scared, b/c I should have been 15w4d at that appt. and the baby (all in proportion, thank God) was measuring 14w6d..Does anyone know how concerned I need to be about that or is this just a petite girl? I am freaking out b/c my other two kiddos (both boys) were always so big that doctors thought they were actually wrong about my due dates.
At any rate...the doctor is not very optimistic, but b/c of our normal chromosomes and the fact that our little fighter is still alive and trying so hard, we refuse to give up our hopes for a miracle....I just have to find a way to let faith overtake my fear and I don't know how to do that right now.
BUT.....Thanks to all of you at this site, I know that miracles DO happen and I cannot thank you enough for helping me to keep hope alive, despite my fear. Plus...it helps to know that we are not alone in this.
God Bless all of you and your babies-to be!
Torie
Megan
Megan
We then headed over the Mat. Fetal Med place. I had another ultrasound. Called it a Cystic Hygroma. Pretty much gave me the diagnosis that it was either down's or turner syndrome. I opted to have the CVS the same day. Got the results back. Chromosomes are normal. We're having a baby girl!
My problem now is waiting. I am scheduled to have another ultrasound and meet with a pediactric cardiologist and have an echocardigram to rule out heart deftects on January 13th. I have chosen to see my regular OB twice until then to make sure she still has a heartbeat. I would like to have another ultrasound in between the time, but they have not scheduled me for one.
I am so scared. My husband and I live far away from family and it's hard going through this alone. I just want her to be ok. I don't think I can handle losing her. I'm just hoping for a positive outlook. I hate this waiting period. I just want to know......
Thanks for listening.
Obviously i am devastated. We waited until i was 11 weeks to tell our family - we announced it on Christmas Day to them. Now just a week later (i'm 12 weeks) we are facing this terrible news. I just phoned the dr. to have CVS scheduled and they also took my blood for possibly infections/diseases. This is by far the most painful experience i have ever been through. It took us nearly a year and a half to conceive...
This board makes me feel as though there is some hope - but i honestly just feel like climbing under a rock.
It appears that based on the results, my husband and i have some tough decisions to make. What makes me even more mad, is that he seems as though he is "fine" through this whole process and what is meant to be will be. While i am in tears......
Megan
My CVS is scheduled for Monday morning. I completed the bloodwork today, so we should have that back by Monday. The Dr. was pretty discouraging - he basically said that if it's chromosomal, the baby probably has DS/Tuners/Etc. or if it is an infection/disease then the baby will likely miscarry. He immediately started to talk to me about DNC options. I had asked him the possibility of the fluid going away, and he stated that they effects it would have had on the baby would be damanaging.
I had my husband break the news to our parents - I don't feel like talking to any family or friends. The thought of potentially going back to the fertility specialist and starting the process over is so depressing. I read all of these stories how women go through multiple miscarriages and i just don't know how they survive through it.
I'm trying to find things to be greatful for - my husband, good job, our home, our family - it will just seem so empty without this baby. Even though I am only 12 weeks - you feel a bond.....
I was reading back through the string of posts - but couldn't find your story. Are you expecting? Or do you have a success story?
Thanks again for your support....
Megan
Macey- My husband is not the type to show emotion and it was tough for me to see him seem unfazed by all that we were going through too. He later said that he felt like he had to be the strong one since I was falling apart. Just because men don't look like they are upset, doesn't mean they aren't feeling just as bad as you are.
"helpmybaby"- my baby's CH was smaller than yours, but definitely septated. Being septated just confirms it is a CH, it doesn't mean there is no hope.
To all of you- just keep doing the tests and praying for good results. What the doctors and genetic counselors speculate doesn't really mean anything. The test results are the conclusive answers. My doctor had only seen 2 CHs in his career and he still can't believe I had a perfect baby.
I recently had someone ask me if I had figured out why I went through this and I said that I thought it was so I could help give the rest of you hope with my story.I haven't been as good as Megan at keeping up with all of your stories, but I hope that my beautiful 5 month old daughter can help give you all a reason to believe there is a chance that things may turn out ok. My prayers are with you all.
My Step-sister has 5 children- 3 had CH's! All live births
and are happy and healthy, one had a hole in his heart and a cyst on his brain...born healthy.
My advice would be to get a new Doctor. After years with the same Dr. I change after three consecutive miscarriages, found a fab new dr who listens and takes good care of me. Dr's can't know everything, I think we should assume they don't.
Good luck~keep the faith!
Last time I was on I was still waiting on the results of our cvs testing. The doctor finally called and told us that they were unable to grow anything on our samples, so he didnt have any results for us. I guess this can happen in 2% of the samples and we just happened to fit into that category! He brought us in the next day for our 14week ultrasound to check the hygroma. It had grown significantly and had stretched out into the head, spine and abdominal area. They also could only see three chambers in its little heart and could not find a bladder or stomach. the baby was also about the same size from ultrasound we had three weeks before. he told us that basically our little one would not make it even if it survived to birth. So, unfortunately, on Dec. 23rd, we terminated our pregnancy. It was/is a very difficult decision to make and I hate that we or anyone else has to make it!!! I am still struggling with our decision, but deep down, I know we made the right one. All of our doctors have told us that the likelyhood of this happening again is very slim (1%), so I'm hoping that they are all right. I don't think I could go through this again!! We have decided to try again as soon as we can.
We are waiting on the genetic testing to come back from our d&e. They said it will take 4-6 weeks. I'm sorry, but I still don't understand why it takes so long to get all these results back!! The waiting is just terrible for those wanting their results!!! But, I guess it's better to be accurate and get as much info as you can. So, I will try to be more patient. They also will be able to tell us if our baby was a boy or girl. (it was too small to tell at the d&e) This seems to be important to me for some reason. Maybe I just need to know for closure......
I am so happy that so many of you are getting better outcomes than we did!!! I also hope you all continue to find the comfort from the people on this site who have been there and understand! I think it is great that you share your positive outcomes and give hope to those that are in the "beginning" of their diagnosis, and looking for answers. Also, thank you for the support and encouragement you gave me when I found this site! It really helped to hear from those that have been there!!!!!
You have certainly been on an out of control rollercoaster, and unfortunately, nothing turned out like you wanted it to. There is a web site that may be of some comfort to you during this painful time, it is a web site for families that through much anguish and sorrow eventually terminated much wanted pregnancies due to medical reasons. A very difficult and painful position to be in. Please let me know if you like further information, as it is invitation only, due to its very sensitive topic.
My heart goes out to you, may you find strength in these dark days.
Peace,
Istherehope
We received the rest of the results from the CVS and we have some type of what you would see on 20/20 situation going on. The babies chromosomes are dissapearing. So it went from 2 to 1. They said this was causing the Hygroma. However, we have come to the point that we realize we cannot be selfish anymore and this little baby is not going to be a healthy one. They said now that we have two things against the baby it will not carry to full term. We have decided to terminate. I have an appt for my Cervix to get softened tomm and then Friday is the termination. Since I am almost already 14 wks they have to soften the cervix which I am really not looking forward to. I don't see how that can be comfortable. Also, just wondering if there was anyone who terminated at this point as well how the recovery was. I mean physically I know emotionally its going to be a rollercoaster. I will check in on everyone and wish you and all your babies nothing but the best and I will continue to pray for them.
When I went through with my medical termination, I had wished someone had fully prepared me on what to expect, now I'm not so sure if that is the right thing in the very beginning, My genetic counselor put me in touch with several women who had also terminated, that helped. If you would like to contact me personally my number is 631-321-4647, I live on the east coast, if you think this is something you think would help I would be pleased to help you through this very painful time.
I wish you strength and healing,
Istherehope
I am just back on after a hair-raising couple of weeks. We, too, ended up losing our little girl. I went in for a regular check up (at 18 weeks) and my blood pressure was sky high. They sent me to the hospital, where it continued to climb and then they sent me for an ultrasound, which showed the baby had developed hydrops and her heart and lungs weren't quite right. Also...I had begun to mirror her symptoms...very rare condition that put me into an early form of pre-eclamsia (sp?) The only way to save me was to deliver the baby.
Helpmybaby...I am SO sorry you will have to do this. I had to go through a full delivery....complete with cervix softening drugs, eppidural (sp?) and all. It was agonizing emotionallly, but the nurses and doctors were all so wonderful....their only concern was bringing me through it comfortably. Make sure you make your wishes known to the nurses....you deserve to be comfortable and so does the baby's father. Get them to help you and find out about the support available for perinatal loss at the hospital. I just went through it all a week ago and I can say that the recovery, while a constant reminder of what I just had to do, is not bad at all...not even close to when I had my full-term babies (they were 9 and 10 pounds....so go figure!). The hardest part is the hormonal part and the emotional part and again....my doctors have been awesome about giving me something to help with that as well. DO NOT BE AFRAID to ask for help and tell your doctor EXACTLY how you feel.
The light at the end of the tunnel.....I know our baby is much more comfortable where she is now.....she was SO, SO sick. As much as I would have loved a miracle, I realize that I was being so selfish because she was so bad off.... And...I had no idea how sick I was on top of it.....I am blessed with two little boys already and when they told me that I could have actually died from this, I was just so grateful that I had the appointment and they were able to prevent any further damage to my own health...I don't want my kids to be without a Mommy!!!! And, I know I must have been sick b/c just a week later, I am feeling a million times better than I was. I swear that when your baby is that sick itself...your body just knows that it has to let go.
I am SO sorry that you have to go through this hell on earth. Hang in there....your baby will be in a better place and eventually, you will feel better....changed, of course, but better. Good luck with everything and please take care of yourself.
May God be with you in this most difficult time,
EvansmominGA
Thank you so much, again. I just hope I can be of help to someone else...the way this site has helped me.
Take care and hug your kiddo extra tight tonight for me!
I wanted to update you all on our test results. The doctor told us it would take 4-6 weeks to get them back, but finally something was to our advantage and they came back yesterday after only 3 weeks!! Anyway, our little one had Trisomy 18, and was a little girl!
This is both sad and reassuring to me at the same time -- if that makes sense. On one hand I am so very sad that this happened to our little girl, but on the other, it helps to know that we did make the right decision in terminating our pregnancy. Our little girl is no longer suffering inside me, and most likely would have had no quality of life.
We were told again that there is about a 1% chance this would happen again, and I hope and pray that they are right. It was a very devastating time for us and I don't know if I would be strong enough to go through it again!
Thank you all for the encouragement and I hope that someday I can help someone in this situation like you all have helped me!! I pray that anyone who finds this board knows they are not alone and they all find the miracle they are looking for!!
fetal echocardiogram and that turned out to be normal too. So I am now at 23 weeks with a healthy baby girl!
Please don't give up, there is hope. Please get a CVS or amnio to get a definite answer before even thinking about termination. Hygromas can resolve, even septated ones like ours and miracles can happen :-)
Angie
My baby boy was diagnosed with a 6.4mm CH at 12 weeks and given very little hope. Following a normal CVS and echocardiogram, I now have just under 4wks to go before I deliver my healthy little one, when I'll be sure to let you all know. My advice would always be to have as many tests as you feel you need to give you as many facts as possible, rather than going on statistics alone, your baby has every chance of being one of those that DO make it so never give up hope.
Best wishes to you all for positive outcomes, and for those that had bad news, my heart goes out to you, but you are strong women to share your stories and that strength will help you through. Love to you and all your babes xx
We found out that I was pregnant when I was a week along. I was ecstactic always wanting kids having my kids planned out two years apart and everything. Obsessive compulsive I guess you could say. We went to out u/s at 12 wks and they found the cystic hygroma on the back of her neck measuring 4mm and didnt quite understand it too much. After crying no sleep and lots of research we definately knew what ch was. We had much hope still thanks to the web site before. We went and had the cvs done. We waited and all results came back normal the q22 test came back normal everything so we were excited that we still had a really good chance of the baby making it.
We went in for the 20 wk echo and the tech was having issues finding good pictures so the doc came in and and got some better pictures. As far as she could see her heart looked structurally ok but................found fluid around the heart and stopped talking about the heart and told us because the structure was the least of our problems. Few hours after I had a 20 wk u/s and went in and she was being so cute having her hands over her face not cooperating being very modest and they found fluid around her lungs abdomen and all through out her skin for those of you who dont know what that is called it is fetal hydrops.
The doc came and talked to us in the consultant room and explained to us what was going on and I knew that the CH and Fetal Hydrops combine gave us little to no hope. He said he wanted us to come in for weekly heartbeat check ups to make sure that she is still alive. Basically waiting from week to week to die.
We are hoping on the sliver to pull through but know that our chances are not good and the chances of her surviving are almost none. Because of my Aortic Stenosis but it sound general for most women my cardiologist wants me to wait a year after each birth. Which to me is dreadful cuz it ruins my plan but............... I guess there maybe a differant plan for us.
Pray for her!! I hoping some miracle can happen!!!!
Briney
I’m new to this board and just wanted to take a minute to introduce you all to our story and experiences with cystic hygroma.
On December 1 we went for an ultrasound at 11 weeks. On December 8 I received a phone call from my OB letting me know that our second baby girl ( I have a 19 month old at home) had a thickened nuchal transluscency and a cystic hygroma measuring 10mm. She said that this was a very severe case and referred me to the maternal fetal medicine department. We had an amnio on December 15 and the results came back normal. On January 14 we went for our routine level II ultrasound at 19 weeks. We already knew that we might hear that our baby has a structural defect (such as heart or skeletal) but were not prepared for what we did find out. Our baby girl (named Sienna) had developed significant bilateral pleural effusions or fluid in her chest cavity. Our doc said that many babies can live in utero with this condition but cannot survive after birth as their lungs have not been able to develop. He referred us to a Special Pregnancy Unit at Mount Sinai hospital in Toronto on January 15. A few of the docs there specialize in pleural effusions and in-utero treatments for them. We decided to return the following week to have pleuro-thoracic shunts placed in our baby’s chest in-utero, to drain the fluid so that her lungs can grow. When we arrived on Jan 21, a scan revealed that the effusions had gotten WAY worse and the doc was skeptical as to whether the procedure would be effective or not. We wanted to try and so we had the shunts placed on Jan 22. They also took additional amniotic fluid at that time to do a genetic micro-array test (which came back normal) and to do a test for Noonan’s, which we are still awaiting the results.
It’s been 2 weeks since the procedure and to everyone’s surprise, the shunts are working perfectly, all fluid has drained from her chest and her lungs are normal and healthy. A fetal echo also showed a perfect heart. She measures right to her gestational age. I am 22 weeks now and we are by no means in the clear yet. I am having scans weekly to check on everything. The hygroma is still there, but has gotten no bigger or smaller (still around 10mm). I feel my little girl kicking away everyday and am hoping that she continues to thrive!
You are all very brave mamas…I’m glad that we at least have groups like this to help us through these challenging times. There’s also another great group of ladies in our same situation on babycenter.com (cystic hygroma support group).
Jenn
xoxo
Megan
-Linzy
Megan
Well, Baby Kian finally arrived safe and well yesterday morning (1st Mar) ten days late and a whopping 9lb 7oz, with no pain relief, ouch! Am relieved to say he is fit and well, and just has an extra fatty neck, but hell, he's pretty fat all over really! He's beautiful and we're so delighted we listened to our hearts and fought to keep him in those early days when things loked so bleak for him. (for those of you unfamiliar with me, he was diagnosed with CH at 10wks, which grew to 6.4mm, and then disapeared again at 16wks) never never give up hope ladies, I'm so glad we never. Love to all your families and best of luck with whatever situation you find yourselves in. XXXX
I haven't been on for awhile, but do occassionally check back to get updates on everyone...I hope that is ok!
I also, have some more news myself....I found out yesterday, that I am pregnant again! Not what we were expecting so soon after losing our daughter in December, but happy nonetheless! I am extremely nervous, but trying to stay positive -- for me and the baby! My doctor has already scheduled me for an ultrasound and is waiting for a date for our NT scan. I want to be sure that everything is ok this time around, and hopefully we will be CH and T18 free -- with no other surprises!
Anyway, hope all is well with everyone else....still praying for everyone and all that have yet to find this board!!
And Briney, you know how terribly sorry I am for the loss of your sweet little Anastasia. I just hope you're doing alright. I know I've said it before, but if you need anything....or just someone to scream at.....I'm here.
xoxo
Megan
All my love to you and your family,
Megan
But to remind people there can be positive outcomes, my gorgeous boy was born strong and healthy after an initial 6.4mm CH diagnosis.
Anyone who uses facebook can see him for themselves by looking me up Anne Collins (liverpool network) and he's in my pics.
Best wishes to everyone xx
-Amanda
xoxo
Megan
trying to stay strong
-amanda
xoxo
Megan
how about you????
Be sure to pop in from time to time and keep me posted on that little girl! And give her a little belly rub for me:)
xoxo
Megan
-amanda
1) Take one day at a time. The waiting, uncertainty, and unknowns can overwhelm you. Try getting through moment to moment. Not that it is the right thing to do, but while I was waiting, I filled up my calendar each evening with something to do. The distraction was nice. Regardless of my suggestion, do what is right for you, but focus on getting through one day at a time.
2) Don't give up hope for you or your little one. You are stronger than you think.
3) Never forget that you are supported. None of us wanted to members of this "club", but we are all so lucky it exists. If you need anything, we are here for you. You can send me a personal e-mail or look me up on Facebook under Farrah Kugel Watson.
I will have you in my thoughts over the next weeks.
Farrah
xoxo
Megan
-Amanda
xoxo Megan
I posted back in November '08 when I was frantic, searching for information. I've often thought of you all and wanted to come back to thank you for your wisdom and hope.
My baby was diagnosed with a septated CH of 9mm at 12 weeks. I went through every test imaginable and no doctor would conclusively tell me that she was okay, even though her results kept coming back "normal". She was born on April 14th, perfectly healthy. No cardiac defects, no obvious physical defects, and so far she is developmentally fine. She's beautiful and healthy. She's my little miracle. We beat the odds.
So, without sounding like I'm blowing sunshine up anyone's butt, I want to tell all the ladies who are going through this right now to please keep the hope alive. I know it's hard under the circumstances, but there is a very real chance that everything will be okay.
I am really grateful for the support and hope I found ehre when I needed it. Thanks ladies!
Jeannie
I'm absolutely thrilled for you....your story will give that glimmer of light that all of the women going through this are desperately searching for. CONGRATULATIONS!!!!
xoxo Megan
absolutely heartbroken
-Amanda
xoxo Megan
xoxo Megan
To Amanda- I am so sorry that you had such a horrible experience with that doctor. I just read your story to my husband in astonishment. No one should ever be treated that way and she had to know you were going through a hard time. Why is someone with no compassion in that line of work? I hope the best for you.
Determined to fight,
Amanda
xoxo Megan
Amanda
xoxo Megan
xoxo Megan
xoxo Megan
When I went back to my OB just this past Friday she said that she did not agree with everything that the Specialist said and we are getting a second opinion from another fetal medicine specialist. She does not think that if one baby is affected then they both will be automatically affected. She did not agree that I was tool late to have a CVS done. She also does not believe that you can tell without a shadow of a doubt that the babies are identical at this point. I am waiting for the call with the appointment with specialist number 2.
My husband I are very scared at this point. We are trying to be as hopeful as possible, but we are scared. All of the information I seem to be getting up to this point seems to be so horrible. I was very glad to find this board because it seems so much more positive. Does anyone out there have anything to offer to my situation. I can't seem to find much information about CH in one twin.
xoxo Megan
I have a baby who was diagnosed with a CH at 10 weeks. I was talked out of the CVS by the specialist so I had to wait until 15 or 16 weeks for the amnio. It turned out normal, the CH went away and she just turned 1. Everything came out just fine. Don't give up hope. Keep us posted and we will be thinking of you.
Denise220, do you regret not having a CVS? We are trying to decide about that test. I have an appointment with a new specialist next week.
xoxo Megan
Candi -
I am right there with you!
xoxo Megan
Kelly
-bianca
http://benotafraid.net/story.asp?id=6
Now this little girl has Down's and a heart defect, but the fact that her hydrops had resolved and she actually survived is the part I'm paying most attention to:) That story right there is a true testament to hope. Keep it. Be realistic, but it can't hurt to have a little glimmer of light. If you have any specific questions that I could maybe answer, or that I could at least find the answer to, please just say the word. We all know the waiting is agony....hang in there. If there is anything at all I can do for you, don't hesistate to ask. I'll be thinking about you and your little one. Please keep us posted. Lots of hope and stregth sent your way momma!
xoxo Megan