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Subject: Re: cystic hygroma-hydrops any help please!! Author: Nicole [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 03:51:16 11/28/03 Fri In reply to: monica 's message, "Re: cystic hygroma-hydrops any help please!!" on 15:07:25 11/07/03 Fri I don't know if anyone still checks this forum, but I thought I might try. I don't have any kind of big deciecon to make right know, because we have decieded to enjoy every moment that out baby,Faith, is alive during the pregnancy. I'm 24 weeks along and was told 6 weeks ago our baby has cystic hygromas and sever hydrops and also had a 1% chance of surviving. I have great faith in God and I know he has a good plan for our baby. Although there have been weeks that the hygromas have grown and the fluid around the belly has worsened, the fluid around the heart has stayed the same. And we have taken that as huge blessing. God Bless Nicole [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Kris [ Edit | View ] Date Posted: 18:25:42 01/12/04 Mon I'm in a very similar situation. Today I am 16 weeks along, and our baby also has hydrops and cystic hygroma. They told me it would be days or weeks and the baby's heart would fail. I feel like I'm on such a roller-coaster. How is your baby doing and how are you? God bless you. Kris [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 09:22:39 01/15/04 Thu Hi Kris, On this board it seems like soo many have had both hydrops and cystic hygroma. I'm going to email you w/ the address of someone who had a baby girl w/ TS, and had both hydrops and hygromas diagnosed prenatally. The little girl lived! It seems that there is a lot of info on the one end of possible outcomes, that there is very little chance of a baby surviving with both hygroma and hydrops, esp early in pregnancy. But, it's important to know that there *are* exceptions and any one of us could be that exception to the rule! I'll be emailing you shortly! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Angelea Pickett [ Edit | View ] Date Posted: 10:56:32 01/20/04 Tue Can you please send me that story of the baby surviving with cystic hygorma and hydropys? Thanks, Angelea [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 11:38:06 01/20/04 Tue Hi Angelea, I told Kris in email, but I'll post to you here. The story I thought included hydrops actually only included hygroma. But I would be happy to share the same info I shared with Kris if you are still interested -- just let me know! Sincerely, Monica PS -- Wow -- Joanne is going thru this right now -- I just read her posts right after she posted. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: sarah [ Edit | View ] Date Posted: 08:28:47 05/22/08 Thu you said you would post a web address of the baby girl who survived with hydrops can you plz email this to me , [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: maggie Cummings [ Edit | View ] Date Posted: 07:59:50 05/10/04 Mon I have a friend who is 12 weeks and just found out that her baby was diagnosed with hydrops and cystic hygroma. She is also on a roller coaster and wants to find out all she can, so if anyone can give me names and #'s of doctors who specialize or can be of service please email me. It is very hard on her and her pregnancy, but I know there has to be some hope. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Maggie [ Edit | View ] Date Posted: 19:16:12 02/04/04 Wed Hello. I was 19 weeks pregnant when my baby was diagnosed with fetal hydrops and cystic hygroma along with Turner's syndrome. We were told that there was a o% chance of survival. Three weeks later, when I finally got an appointment for a 2nd opinion, I found out that the baby no longer had a heartbeat. This has been the most painful experience of my life. If anyone would like more info, please email me. I will be more than happy to talk to you about this. Sincerely, Maggie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Laurie [ Edit | View ] Date Posted: 12:38:42 02/10/04 Tue Hi there, I'm so sorry to hear about your baby. I just went through a very similar situation and your right, it is very devasting. However, realize that you did the best you could do for your baby and everything possible. It may be better this way. I lost my baby Sunday February 1st. She didn't have turner syndrome but did have hydrops and down syndrome. I was 23 weeks when I lost her. I am slowly recovering, and you will too. If you want to e-mail me personally to talk more, please feel free to do so. Take care and know that I am thinking of you. Laurie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Liz [ Edit | View ] Date Posted: 14:25:39 06/06/04 Sun I am 17 weeks pregnant and just found out my baby has cysic hygroma and hydrops fetalis. I have never even heard of this and would like to get more information about it. Doctors havent been helpful. My baby is so swollen they cant even tell the sex. I HAVE ALOT OF QUESTIONS. I Dont know what to do and would like to talk to someone who has been though this. I am really scared they said I have a severe case. did anyone have their babys buried? I plan on going through with my pregnancy. Even though they say there is no chance. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 16:54:57 06/07/04 Mon Hi Liz, I'm so sorry you are facing this kind of bad diagnosis. If look over the board here, you will see that there are many, many others who have been through it. You have my prayers and my hopes that in your case, things could turn out okay, but if they don't -- that you will have the support of those who love you! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rochelle (finding peace) [ Edit | View ] Date Posted: 12:23:32 06/03/08 Tue I too have been there. I am 28 and just went through the hardest five weeks of my life. When we were 14 weeks along we were told that our baby had a severe case of cystic hygroma-hydrops and there was no hope and prepare for the worst. They knew we were people of faith so they never suggested termination. Those next weeks that felt like months we were on our knees begging God for a miracle. Everyone around us prayed that God would heal our little angel if it was His will. I also prayed the hard prayer that if our baby was going to suffer on earth that God would take it from my womb to his loving arms. At the next app. there was no heart beat and little Grace went home to live with our saviour Jesus Christ. When others found out they were devestated for us, but not us we knew that God got to see the big picture and spared our Grace and us a life of pain. My husband and i said if our story helped even one person it was worth it. This was only a month ago and I am open to sharing more with you and help you through this difficult time. In (2 Cor.1:3)God tells us to use the comfort we recieve from Him to comfort others. Take this waiting time to draw close to God He is close to the brokenhearted. I pray that the peace that surpasses all understanding will comfort you through this trial. E-mail me anytime. Blessings, Grace and Peace to you from our Lord Jesus Christ. Rochelle [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Vickie [ Edit | View ] Date Posted: 08:51:13 03/18/04 Thu I understand your pain. I just recently lost my baby girl on Christmas day 2003 to cystic hygroma with fetal hydrops. I was 27 weeks when I had her on the 23 day of Dec, and she fought for her life for 2 days in the NICU. Because of extra amniotic fluid I tried to go into preterm labor with her and when the contractions were stopped, I stated accumulaating fluid around my heart and lungs and finally we had to decide to do an emergency cesarean section. I feel like you do. I don't have any answers. The doctors thought she had Turner's syndrome before I had her but the results of the chromosomal analysis done showed no chromosomal abnormalities. I've tried searching for answers but have not found none. I know your pain and I truly smpathize with you because I feel the same pain. The only thing I can say is it was God's will for them and somehow we have to accept that and move on somehow. They are in heaven together. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Sandra [ Edit | View ] Date Posted: 17:14:40 04/18/04 Sun Hi Vickie, I am sorry to hear about your daughter passing. My daugther also had hydrops passed away a few hours after birth. It was traumatising to say the least andI think that not knowing the cause of the hydrops is quite frustrating. It odd that in this day and age that awnsers to a situation that affect innocent feotus is still so mysterious. I hope that you are doing better . Sandra. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Amy [ Edit | View ] Date Posted: 18:15:07 01/12/07 Fri I am 15 weeks and just found out that my baby has cystic hygroma and hydrops. The research I've found online is really depressing. Has any baby ever lived with this horrible devistating news? [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: mom [ Edit | View ] Date Posted: 10:59:53 07/27/07 Fri liz its been 3 years since this web page was made the pain is still hear just like yesteday. it will never go away i miss christian joseph donnelly I will never get to hear christian call me grandma like alexandera she misses her brother that would be 3 years old all i can do is go to his grave up on the hill to help me deal with the pain. it all you were very stong to go through what you hade been dealt with you have been through alot now at age 25 diagnosed with mutiple scloris MS I will allways be hear for you no matter what i love you and lexie very much mom [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Ethel (Sad-Mom) [ Edit | View ] Date Posted: 23:02:25 10/24/07 Wed I am 19 weeks pregnant and just found out that my baby has hydrops, If anyone can tell me what is the medical process on going through this it would help me very much. Sincerely, Ethel [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Latashia (Stressed) [ Edit | View ] Date Posted: 15:52:46 02/17/08 Sun I am going through a very similar situation. i am 4 1/2 months pregnant right now and my daughter has Hydrops and a Hygroma. They tell me she has a very slim chance of making it through the whole pregancy.I have been an emotional wreck since i found this out. I know this may seem bad but if i knew if she was going to die or if she was going to live i would be better rather than this up and down...maybe she will then again maybe she won't. to make matters worse the doctors tell me that i need to not work right now. so all i do everyday is just sit here and wait for soemthing to happen. its driving me crazy. What happen with your guys babies???? [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rochelle (hopeful) [ Edit | View ] Date Posted: 12:42:16 06/03/08 Tue Hi Latashia I understand what you are feeling and going right now. A month ago I was in your shoes. At 14weeks We were told that our baby had a severe case of cystis-hygroma with hydrops. We are people of Faith so I refused to do any reasearch on the disease and to pray God's will for our lives. We asked God for a miracle and He answered us by taking baby Grace from my womb to His loving arms when I was five months along. We prayed that if she was going to suffer on earth for God to take her home. I have a hard enough time watching my son struggle breathing with a cold let alone watching a child struggle for air everyday. We have gone through a tornado and we have felt Gods peace and comfort. I encourage you to use this time of waiting to draw close to Him by reading and studying His word. I also I found a lot of "Joyce Meyers" teachings to be helpful. With subjects on hope and fear. Read Psalms especially Psalm 139: Where it says "We were formed in a secret place" God is bigger then technology and can do anything that seems impossible. E- mail me anytime Rochelle ( Michigan ) [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rukiye (Worrying with twins) [ Edit | View ] Date Posted: 08:00:19 02/28/08 Thu Hello, I am 13 weeks pregnant with identical twins. One of the twins has cystic hygroma and hydrops back of the neck. I am waiting for CVS test result and hoping that the other twin have no problems. I would like to go ahead with pregnancy but I am so worrying and don't know how I am going to cope with all this. Good luck to everyone!! [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Missy (Praying) [ Edit | View ] Date Posted: 08:08:02 05/09/08 Fri I'm 11 weeks pregnant with twins and my husband and I were told yesterday that Twin a has a cystic hygroma. The US tech pretty much told me I should terminate now because there's rarely a good outcome. After speaking with the geneticist and my ob we decided on CVS in a week. My husband and I have placed this in God's hands and whatever He wills will come to pass. I pray for each and everyone of you who have gone or are going through this situation. God Bless. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Lacy [ Edit | View ] Date Posted: 21:50:30 04/04/09 Sat I am 20 weeks along with twins and one was just diagnosed with hydrops and hygoma. I did the amnio last week and still waiting for the results (should know this week.) I am going crazy not knowing if the other one is healthy. Is it likley the other twin will make it? [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: LACEY [ Edit | View ] Date Posted: 01:30:40 04/02/08 Wed HI THERE ITS BEEN 7 WEEKS NOW SINCE I LOST MY LITTLE GIRL HOPE LIILY TO HYDROPS ITS BEEN AN EMOTIONAL ROOLACOASTER I WAS LIKE ALOT OF YOU WOMEN I FOUND OUT THERE WAS A PROBLEM AT 19 WEEKS AND WHEN THEY TOLD ME SHE WOULDNT MAKE IT ALL I COULD THINK WAS IM NOT GIVING UP EVEN IF THERE IS ONLY A SMALL CHANCE THATS BETTER THAN NO CHANCE .SO AS THE WEEKS WENT ON SHE HUNG IN THERE THEN ON THE 1/02/2008 I WENT FOR A ULTRASOUND AND THATS WHEN THEY COULD NO LONGER FIND A HEART BEAT.SO THEY INDUCED ME AND I HAD HER ON THE 2/02/2008. WE HAD HER FOR SIX HOURS AFTER I HAD HER BUT HER POOR LITTLE BODY DETERIATED TO QUICKLY SO IT WAS TIME TO SAY GOODBUY THAT WAS ONE OF THE HARDEST DAYS IN MY LIFE. BUT I SAY TO ANYONE WHO IS IN THIS POSITION NEVER GIVE UP .STAY STRONG AND HANG IN THERE AFTER SEEING MY LITTLE GIRL AND HOW MUCH FLUID WAS AROUND HER BODY I KNEW SHE COULDNT FIGHT ANY MORE. BUT I KNOW I GAVE HER THE BEST CHANCE NOW I HOPE THIS HELPS YOU TO MAKE THE BEST OF THE TIME YOU HAVE WITH YOUR SPECIAL ONE. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: megan [ Edit | View ] Date Posted: 07:17:44 04/30/08 Wed I am currently 19 weeks pregnant. My baby girl was diagnosed with cystic hygroma with hydrops on ultrasound last week. She alos has an omphalocele and an abnormality in the ventricles in her heart. She has been given 0% chance of surviving past the next 30 days. We have come to terms with the diagnosis, but the waiting is killing me. We have chosen to let God take our angel to heaven whenever he see fit. I was just wandering if anyone had any advice as to how to get through the waiting period. Thanks. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rebecca (Heartbroken) [ Edit | View ] Date Posted: 06:35:02 05/20/08 Tue I am now fifteen weeks into my fourth pregnancy and have been told by my consultant that my baby has both cystic hygroma and hydrops, I NEED to know that some babies do survive this and don't suffer. My consultant told me that babies that present this early on with these conditions rarely get past twenty weeks of pregnancy, how can that be true when its heart was beating so strong on scan yesterday??? I am going for CVS in two days, I am devastated. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Amber (Sad) [ Edit | View ] Date Posted: 20:43:33 06/12/08 Thu I went for my 1st pregnancy check up today and had an ultrasound. I am 11 weeks and 4 days and my baby was diagnosed with cystic hygroma and hydrops. We are devastated and need more answers. I am confused. We had lots of blood drawn today and my CVS test is scheduled for Monday at 10:15. I am a wreck!! My baby was moving around like crazy and had a strong heartbeat. I keep staring at the ultrasound pictures and cry like crazy. I am falling apart but need to stay strong for my 4 year old little boy. My baby had 4 mm extra fluid in its head and belly. We even got pictures of the face and everything looked good to me!!! How can that be? I can't handle waiting 7-14 days for results. Please help and pray for us. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Bernice Marley (hopeful) [ Edit | View ] Date Posted: 13:24:04 12/26/08 Fri I work with a woman who had a child with cystic hygroma with hydrops. the child is now in the first grade and, except for some facial distortions, the child is fine. she chose to not terminate her pregnancy and gave it to God. There is always hope and I depend on Miracles. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Julie (Praying) [ Edit | View ] Date Posted: 10:50:14 07/08/08 Tue Hi, I just turned 25 weeks this Sunday and our daughter has Turner's Syndrome along with the cystic hygroma and fluid both around her heart and her belly. Anyway, June 17th we went to have a level 2 ultrasound done, and the doctor told us she now has the hydrops. All of this is very frustrating, but I believe God has a plan. My husband and I aren't giving up on her. Good luck to everyone. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Stephanie (Pain) [ Edit | View ] Date Posted: 16:10:37 09/18/08 Thu I am 19years old and 14 weeks pregnant. When i was 10weeks pregnant the doctor told me they saw a abnormal neck fold on the baby, but it sometimes goes away and since the baby is perfectly healthy other than that we should not be too alarmed. I went back 3 weeks later to find out that the baby has not progressed and the "neck folds" are now Cystic Hygromas, and there is a chance that the baby may have turner's syndrome. I was with a midwife group and they sent me to a Hospital where they specialize in deformalities in early pregnancy (savannah perinatology). So Today i just had by appointment and i went in very confident that everything would be okay. My ultrasound showed that the Cystic Hygromas have spread from around the neck now to around the tummy. The doctor says that there is a 99% of the time a baby like this just gets worse. So i had amniocentesis done and more blood drawn. Im just waiting for results. but even if they do come back with nothing is wrong, the doctor still said this baby would not survive. unless some miracle just happened and the symptoms got better. I met with a genetic counselor and she smoothed some things over with me. but i know im never going to be okay. this is my second pregnancy, my first one was around october last year and i miscarried at 5weeks. Its just so hard, im so young and i know i have pleanty of time, but when im haveing problems this early in life with pregnancy it just seems that its always going to be that way. I have been looking for some story of a similar baby who is fine, but i have yet to found one. I hope some of my information can help somebody. All i can say is just pray, that is all you can do. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Sara (Emotional) [ Edit | View ] Date Posted: 13:49:55 12/30/08 Tue Hello everyone...I am 16 weeks along right now. I just got the news about 2 weeks ago. In a way this is a great site and has alot of real life info on it. Then again in the same way I don't feel much better reading the stories b/c there haven't been any good out comes. Like many of you I have decided to all god to choose when he would like to take our Caleb to be our angel, but you are ALL right it is an emotional rollercoaster waiting for it to happen. Not knowing is the 2nd hardest part. I am just hoping he is not in any pain. How do you get passed something like this??? It is every parents worse nightnear!! I started contracting on the 23rd and part of my water came out the day after Christmas. Within a week Caleb as gotten alot worse with his fluid in his belly. My heart is breaking and I just want some glimps of hope. No matter what I read or what the doctors say I still am holding out that miracle that everything is gonna be ok. My 6 year old daughter is taking this very hard too. It has been very hard trying to explain this to her when I don't understand myself. Well I wish you all the best and I will be praying for all the babies and families that have to go through this. If anyone has any advise please I could use all the advise and support I can get. Btw I have chosen to have a serive for Caleb if or when he does pass...what did or do you guys plan to do?? Well anyways god bless...stay strong! [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Unsure [ Edit | View ] Date Posted: 11:29:37 07/16/09 Thu I don't know if this site is used anymore, but I am 21 weeks pregnant and found out last week that the baby has cystic hygroma and hydrops. We are awaiting results of the amniocentisis to find out if/what chromosomal abnormality is present. The doctors say the baby will not survive to term, but even so, I am unsurea about terminating it. I would rather that the baby live and die naturally. How many weeks along were you when the baby's heart gave out? I would have liked my baby to live a full and beautiful life, but living every day not knowing whether it is living or dying is terrifying. Thank you for your honesty & hope. [ Post a Reply to This Message ]