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Subject: Re: cystic hygroma-hydrops any help please!! Author: Mike [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 05:37:32 09/29/03 Mon In reply to: Carole 's message, "cystic hygroma-hydrops any help please!!" on 02:03:32 01/19/03 Sun Hi there, My name is Mike and I'm 38 years old, with a beautiful and wonderful wife and five equally beautiful and wonderful children. I was born with Cystic Hygroma in 1964 and nearly killed my mother in the delivery process. But with the will of God and the prayers of many choice souls both my mother and I survived. My cystic hygroma was the largest recorded at that time and in fact, to this day I have not seen one to even match in its extent and size. I have lived a full and active life for the most part, although I have had reoccurances with the disease. It is for this reason I was on the web trying to find out all I can to alleviate some of the pain and suffering I encounter from time to time, when I read your story, I became soften by the Spirit because of the love you have for your family member. I realize that so much time has passed here since you posted your request for help and my comments will probably go unserved, however, I wanted you to know that I was touched and I would be willing to communicate with you to offer hope and prayers and emotional support. Obviously, I don't know what family member decided to do. The doctors have told me that if ultrasound had been available when I was born, they would have advised my mother to having me abort because of the danger to my mother's life. However, we are very pro-life because of our great faith in God and in His Son Jesus Christ, and my mother would have had a C-section and risked her own life. I love my mother dearly! I love my life dearly as well. My life has been difficult and trying, both emotionally and physically. I've had numoruous surgeries and yet I am so grateful for the life that God has allowed me to live. If you would like me to communicate or offer my assistance from my experience or perhaps even speak with my mother who is extremely healthy to this day, having raised 7 children, (I was the third child born, oldest son, and the only medically challenged in this way), that would be great if we could in some offer hope and a little happiness in your lives. Sincerely, Mike [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rachelle Denis [ Edit | View ] Date Posted: 05:05:09 10/31/03 Fri Hello I am 31 years old and I want for an ultrasound and the doctors discovered cystic hygroma and suggest I terminate the baby as early as next day. I am Catholic and Pro-Life but they also said that it would endanger my health is I decide to go on with the pregnancy. This is the first time I hear of this and don't know what it is exactly but I am torn with this decision. [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Lisa [ Edit | View ] Date Posted: 11:17:53 11/01/03 Sat Hi Rachelle- I am pro-life and Catholic, and I had a complicated pregnancy too, so I understand being pulled apart by physicians and by faith. Now, onto your situation: What is the risk of waiting? If the baby does have it's unfortunate demise in 4 to 6 weeks, you maybe still be able to deliver vaginally. If the baby should fight and live longer, then a c-section would be in order. You may have risked a c-section any way by the baby being large or not breech. So to me, a c-section would not be the deciding factor. As for high blood pressure, these things are controlled either by medication or by going on bedrest. If your health was in danger, then delivering the baby at that time (when it's in danger) is the best thing to do. Letting God decide when the time is right is really the choice here. If you wait and let God take his course, then your soul would be free of the burden of taking the baby's life. I assure you, that most doctors are giving your the worst scenario in many cases to be exempt from future lawsuits. For myself, I was told to not continue the pregnancy, that the baby was going to be malformed and not have lungs (I had severely low amniotic fluid as soon as I hit the 3rd trimester). My diabetes was out of control and I was having to shoot two needles full of insulin every 4 hours when I was awake. My diabetes had the potential of kidney damage to me and many times, I went into shock from the massive amounts of insulin. I was also put on bedrest. I waited until the very last moment I could and had an emergency c-section. I have to run and will try to type more later. I'm sorry this was rushed and seems cut and dry. We know it's not an easy thing, and I truly do feel for your situation. [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: monica [ Edit | View ] Date Posted: 13:00:41 11/01/03 Sat Hi Rachelle, How scary --- I'm so glad you found this board for some support. Okay -- cystic hygroma is a bad diagnosis, but it doesn't guarantee a bad outcome for your child at all. If you look through this board, you'll see several other women also had this diagnosis --please go to all the resources that we posted for them . .. if you can't find them, please post back and I'll attach them altogether for you in one post, okay? This is really important -- you need to find a doctor who will support you in finding a way to carry this baby -- a resolution to this that will not violate your morals. There are drs out there who will help you -- if you want to post roughly were you are, I'm sure we can help you find someone --or if you prefer to email me (or one of us) we can help you find some one more privately. I'll check back -- I also have to run right now -- but please don't panic and don't despair! Hugs to you! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rachelle [ Edit | View ] Date Posted: 17:25:16 11/01/03 Sat Hello, Thank you for your reply. I don't know why doctors try to give us the option to terminate the baby and give us the right to manipulate nature to one's advantage. I think I would feel better if I wait and see but I'm also afraid given the diagnos the doctor has written in my file. I was told that the lungs aren't developing because of the fluid building all around the heart and two massive tissues growing in the back of the head. That the doctor has no hope for the baby and if I do carry the baby to term it will probably die shortly after birth. It was suggested I terminate the pregnancy anyway. I will be talking to my obstetrition on Tuesday to determine what to do at this point but all I can do right now is to try and get support from people who had similar situations and hope they can help me with this heartbreaking news. [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: monica [ Edit | View ] Date Posted: 23:41:31 11/03/03 Mon Hi Rachelle, Holding you up in prayer -- hoping for better news on Tuesday. As really heartbreaking as it is that you may very well be losing your little one, let's hope that if that is going to happen, it will happen naturally so that you won't even have to consider what the drs' are recommending. Since you are catholic, you probably already know about Gianna Molla -- she is a real role model for women going through very difficult pregnancies -- esp those that are a threat to their own health. Okay -- I'll be checking back in Tuesday! Sincerely, Monica [ Post a Reply to This Message ]

[> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rachelle [ Edit | View ] Date Posted: 06:21:21 11/01/03 Sat I was wondering if you got my message the last time I need to go see my doctor on Tuesday and wondered with your experience that you can shed some light. I am 20 weeks pregnant and faced with a hard decision to terrminate the baby because the doctor gave no hope for survival and I am Catholic and don't believe in abortion but the doctor explained that the cystic hygroma-hydrops is massive and you would probably lose the baby in 4-6 weeks and is you have the baby at term you would be needing a C-section because of the mass tissue around the neck and fluid build up around the body and may sustain high blood pressure and others risks involved. I am torn Please let know what you think about all this. Thank you! [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shellie [ Edit | View ] Date Posted: 17:33:41 11/01/03 Sat Dear Rachelle, My heart aches for the pain you must be feeling! To my knowledge, when Hydrops is involved the outlook can be pretty grim. However, I have heard of a positive outcome with a diagnosis of cystic hygroma-hydrops. But in the event that the doctor is right and this baby will not survive, I believe terminating a dying baby is not necessary. I would seek out another doctor ASAP! Living with the grief of losing a child has to be hard, but going against your morals and terminating a baby can cause a huge amount guilt on top of that pain. Please post as often as you like, and feel free to e-mail me. Take care, Shellie [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rachelle [ Edit | View ] Date Posted: 19:44:08 11/04/03 Tue Hi Shellie, I've been to the doctors office and felt I had wasted my time. He ask me what my plan was and that if I understand my situation. He had no answers for me and no comforting words. He pulled out a book, opened it and set his glasses on them. I felt like I was just another patient for him and ended with no word of sympathy. I entered the office again and said is there anything else you can do. All he told me was it's over and that 3 doctors saw your ultrasound, they gave you a poor diagnosis and to go home. I said I guess I only have God on my side. The doctors are encouraging me to terminate the pregnancy which goes against my believe no matter what. I even had a call from genetics to ask us what we have decided yet. It's driving me crazy. Rachelle [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Michele [ Edit | View ] Date Posted: 23:50:49 11/04/03 Tue Hi Rachelle, I'm sorry for the way they are treating you. You don't deserve to be brushed aside like that. I suggest that you look for an OB who is pro-life. They will work with you more on carrying. You can call you local Pregnancy Center www.optionline.org and ask for a list of doctors that they recommend. You can also go in and talk with a counselor. You need somene to love you and listen to you. That's exactly what they will do. We want to be here for you also!!!! Many hugs!!!!!!!!!!!! You are going through so much. Sincerely, Michele [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 00:07:37 11/05/03 Wed Wow, Rachelle, I don't know why some of those drs' even go into ob practice -- so me don't seem to care about women *or* babies . . .sigh. I'm sorry it was such a discouraging experience and that they gave you no good news. Please know that we are on your side!! Your baby is a somebody important and so are you. Hugs!! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monique Gilomen [ Edit | View ] Date Posted: 17:24:49 04/15/04 Thu Yesterday at my visit with the perinatologist I learned that my baby has a cystic hygroma, with a nuchal translucency of 4.2 mm (I am 10 weeks, 4 days), which the doctor claims is very large. I was given what seems to be the typical counseling, complete with "options." When I told the doctor that that was NOT an option for me, he said, "so you will just wait until the spontaneous demise of the pregnancy?" Now the research I have done (correct me if I am wrong) shows the possibility of spontaneous recession of the hygroma, and that no one really knows the true fetal mortality rate, because almost 90% of those diagnosed choose to terminate their pregnancies. How sad! I have opted to wait until I am further along for any kind of invasive testing, since the risk of miscarriage is still pretty high from the procedures alone. I am at peace with whatever the Lord sends my way, but the prognosis seems grim at this point. I will wait and see what the next ultrasound shows. [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shellie [ Edit | View ] Date Posted: 10:28:50 11/05/03 Wed Dear Rachelle, I agree with Michele, you need to seek out a PRO-LIFE doctor. If the doctor is pro-life he/she is going to be more inclined to actually HELP you! If terminating isn't an option in the doctors eyes, then the doctor may have another plan that the other doctors aren't even willing to consider. With my poor diagnosis pregnancy, I had MANY doctors urging me to terminate. One woman doctor actually took me into her office and went over in great detail how my son would be severely retarded and how the best thing to do was to terminate(she told me how I was young and could always have another baby). When I told her that that was NOT an option, she proceeded to tell me just how hard my life was going to be with a retarded child. Then she talked about how unfair this would be to my child. Not ONCE did she even tell me about treatment options, or tell me about any positive outcomes. She was visibly upset at me for not considering an abortion. I got so upset, I left her office. As you know, in my case my son had a good outcome. I certainly can't promise that you too will have a good outcome, but you and your baby sure do deserve at least a chance for one! Please do whatever it takes to find a doctor who truly wants to help you! I am saying many prayers for you and your little one! Please continue to post here and e-mail me directly as often as you like. Hang in there, Shellie [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Rachelle [ Edit | View ] Date Posted: 14:36:28 11/05/03 Wed Shellie, I'm curious to know what pourcentage of survival you were given by the doctor with your baby it might give me hope. I was told that this baby had 1% chance of survival that's pretty high. I have accepted the fact that the baby might survive only a few hours or a few days but at least I can say I had nothing to do with it or if I have a miscarriage. But I have to let nature take it's course because I'm Catholic and Pro-Life I am living it up to God. I will seek another doctor tomorrow, one that will support my decision. I feel that it's the best way. Rachelle [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shellie [ Edit | View ] Date Posted: 16:34:46 11/05/03 Wed Dear Rachelle, The doctors never told me my baby would die, they just told me that he would be severely retarded. The gave me NO hope for him to be "normal". I was only given the most negative prognosis. I've heard that Hydrops is a very serious condition and that it has a high mortality rate. However, I believe that as long as your baby's heart is beating, there is still hope. I also believe that if God takes your baby, you will have more peace with her death than if you were the one who chose to end her life. I'm so happy to hear that you are seeking another doctor. I will pray that you are able to locate a sympathetic doctor who will be on your side! I wish I had the power to make your little one healthy...all I can do is continue to pray. Hang in there, Shellie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Lisa [ Edit | View ] Date Posted: 18:05:15 11/05/03 Wed God bless you for your decision. If you ever want to have some Catholic fellowship and support, e-mail me anytime. I know hundreds of women who would pray for you and your baby. [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: monica [ Edit | View ] Date Posted: 15:07:25 11/07/03 Fri Rachelle, how are you doing lately? Does your parish, or any nearby parishes have something called Elizabeth Ministry? If so, that is the group that the Church has to help you through this. I'm checking back too -- to see how you are doing and if you want to talk. I won't be around on saturday, but I'll try to check back on sunday! Hugs to you! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Nicole [ Edit | View ] Date Posted: 03:51:16 11/28/03 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 [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> 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 ]

[> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Brad [ Edit | View ] Date Posted: 09:30:06 04/08/04 Thu Hello everyone, I came across this thread yesterday via Google. Looks like I'm the only guy posting. My wife and I are 12 weeks pregnant and just yesterday we received the same diagnosis that others in this thread did. We're early along so the "termination" option has been given to us and unfortunately will probably be the route we follow. My wife is very spiritual and fundamentally opposed to that option, but also realizes it is probably for the best. Needless to say, we're still in a state of shock. This was our first pregnancy. My wife is 40 and we thought it would be hard enough just getting pregnant. We were blessed and now it's being taken away. I know we may still be able to try again, but sometimes life's just not fair. Luckily we're both strong individuals and will get by. Right now I'm just more worried about my lovely wife. She has much more at stake right now than I. I feel my own pain and hers as well. Anyhow, thanks for allowing me to vent a bit. Sounds like you've all had your own struggles. Brad [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shellie [ Edit | View ] Date Posted: 10:46:36 04/09/04 Fri Brad, I'm really sorry to hear that you and your wife were given a poor diagnosis...I'm sure you are devistated. I hope you don't mind me asking, but was your baby diagnosed with both Cystic Hygroma and Hydrops? Please feel free to post here as often as you'd like. By the way, your not the only male poster here. This situation is difficult for men and women, but you are right, your wife has more at stake. Going through a termination is a traumatic experience. I will post more once I know the exact diagnosis. You and your wife will be in my prayers~ Shellie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 06:42:59 04/10/04 Sat Hi Brad, I'm sorry you and your wife were given bad news about your baby. I'm wondering, like Shellie is, if you are dealing with hydrops, or just the hygroma, or both?? It is true that the presence of both this early gives a grim prognosis. But, that still doesn't mean that ending the pregnancy is a good course to follow -- esp if your wife is opposed. It's a terrible blow to have the bad news to beging with, but then to be asked to do something that you are opposed to . . . that's a great way to turn a sad situation into a tragic one. There is a long and very informative thread on babycenter.com -- it is hundreds of posts long going over several months. It is mainly about cystic hygromas, though I think some of the babies may have had hydrops, too. All of the women continued their pregancies. Some of the babies did indeed die in utero (which is very sad), but others did not. In some cases, the hygromas resolved. It is definitely worth it for you to take a look there: http://bbs.babycenter.com/board/pregnancy/prenatalhealth/3366/thread/261654 I hope that helps some. Please let you wife know that if she needs some extra support, we are here -- she can come onboard and just "talk" if she wants. I hope we can hear from you again, and of course, I hope that the news gets better for you, too. Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shelley [ Edit | View ] Date Posted: 10:13:53 04/05/08 Sat Hello everyone. I am 12 weeks and 6 days pregnant, my husband and I have also just been given the dianosis of hetal hydrops with cyctic hygromas. We are booked for CVS testing in a couple of days to hopefully isolate the cause. We have been told that the prognosis is poor espcially being detected so early. I am a nurse and have a very good understanding of what is happening and will most likely terminate the pregnancy. I have wondering though if there has been much chance of survival when a fetus has both. I cannot find much info out there, everything seems to be more on the poor prognosis side. I have never been opposed to abortion and allways believed in prochoice but I never once thought I would be making the decision for my own child. I am early enough in the pregnancy to do something about this and I don't want to prolong a life of suffering. Its not fair to this unborn child or to the family I already have. If there are positive stories out there I would love to hear them but at this point I feel there is no hope. Thanks for listening. Shelley [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Maryann [ Edit | View ] Date Posted: 17:36:42 04/23/04 Fri I just came home from the Doctor and had my first ultrasound. I am 10 weeks pregnant and the nurse saw some extra tissue by our babies spine. I am going to have another ultrasound next week. Have there been cases of people that are misdiagnosed on the first ultrasound? The nurse said it looked like cystic hygroma, but she wanted another opinion. Thank you, Maryann [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Shellie [ Edit | View ] Date Posted: 19:39:30 04/24/04 Sat Maryann, Yes, I've seen people misdiagnosed. I've also seen cases where the doctors make people think a certain condition is much worse than it actually is. I know it's hard not to worry, this is your baby, but try to focus on the very real chance that your baby will be fine. Even if your baby has a Cystic Hygroma, that can be fixed. With my first pregnancy the the ultrasound detected an abnormality. The doctors told me the baby had too much fluid on the brain,(Hydrocephalus) and that he would be retarded. My son is 11 years old, he is not developmentally delayed. Doctors can be wrong even when the condition diagnosed is correct. My son still has Hydro, but it has not caused him any health problems. Please continue to post! Use this board to express your concerns. Update us and let us know the results of your next ultrasound. Thoughts and prayers~ Shellie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Brad [ Edit | View ] Date Posted: 23:49:19 05/05/04 Wed Hello all. I'm not sure how long it takes to get posts added to this thread. I did post one yesterday and it hasn't been "approved" yet. Anyhow, a lot has happened since I first posted. As mentioned, our amnio results came back favourable and today we had a 16 week ultrasound they wanted to perform right after the amnio results. The baby's development is right on schedule and all looks well so far. We got the news from the perinatologist that the hygroma has shrunk almost completely and is definitely "resolving". My wife and I both know we are far from out of the woods, but this was encouraging news. We have another ultrasound scheduled for 2 weeks and the fetal echo test in about 5 weeks. We have been following that CH thread on BabyCenter.com which has us so nervous. Too many mothers had normal chromosome results, had the CH resolve, but still had hydrops or other birth defects develop so much later. We're trying to temper family member's enthusiasm because my wife and I both know the realities of the situation. While we are encouraged by the turn of events, we know we still have around 6 months of emotional roller coaster to deal with HOPEFULLY. I say hopefully because if we make it 6 months, there is a good chance we'll make it for good. Only time will tell. Thanks for your words of encouragement. I'll check back in a while. Cheers, Brad [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Brad [ Edit | View ] Date Posted: 23:52:49 05/02/07 Wed It's been 3 years, almost to the day since I last posted here. "Christopher Adam" was born healthy and happy on 10/21/04. He's an amazing kid and we cannot imagine life without him. Just goes to show you that ANYTHING is possible. [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Brad [ Edit | View ] Date Posted: 10:45:21 05/03/04 Mon Hello everyone: Sorry to take so long to respond. We got our bad news 3+ weeks ago and it's been a roller coaster since. Some updated info. Our baby did NOT have any presence of hydrops at both the first and the follow-up ultrasound. That is promising of course. We had the option of an early stage amnio which we took 2+ weeks ago and just got the results back. The chromosomes are normal which is encouraging. Just today we asked about the gender and now know we have a little boy who is in for the battle of his young life. We're undergoing a 15 week ultrasound this coming Wednesday which will tell us what has happened in these past 3 weeks. Obviously we're nervous about hydrops being present, but the Doctor made it clear 3 weeks ago that there is no sign of yet. Now comes the tough part. The genetic counselor told us that even though the chromosomes are normal, the tough part now is finding out why a hygroma is present. So, we've received about the best news possible (re: amnio). The Doctor told us during the last ultrasound (just before the amnio) that the baby seems to be developing fine, all things considered. No sign of any abnormalities outside of the hygroma....YET. This little boy is definitely taking after his daddy so far. As in, he's a little troublemaker! Wish us luck for Wednesday. Brad [ Post a Reply to This Message ]

[> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Hello Brad! Author: Shellie [ Edit | View ] Date Posted: 09:45:37 05/04/04 Tue Hi Brad, Thank you so much for updating the board, please continue to do so. I believe that your baby's situation is very hopeful. I'm praying that your little guy won't have Hydrops. If a Cystic Hygroma is the only medical problem, then it is very likely you'll have a good outcome. I don't know how many of the messages you've read on this board, but some of them include photos and stories of babies/children born with this condition...you might find them encouraging. If you want to be directed to these stories, let me know and I'll find them and give them to you. I have no time at the moment, but later I'd be happy to do that for you. Take care, Shellie [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Hello Brad! Author: Monica [ Edit | View ] Date Posted: 23:32:35 05/04/04 Tue Great news so far, Brad! Hoping for an even better news as things go on. Plenty of times these ch's can just dissipate on their own . . . wow, wouldn't that be great. Okay, I'll be looking for your next update! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! My story. Author: Brandie [ Edit | View ] Date Posted: 14:49:11 05/19/07 Sat I am posting this for anyone who is going through something similar to what I have been through. My husband & I have one son & he a thick nuchal fold at my 19 wk u/s, so I did an amnio to confirm he was healthy. All turned out fine & he is now a healthy 3 ½ year old. After 2 losses & IF treatment, my husband & I were so excited to get pregnant after IVF #2. In order to avoid an amnio I decided to go in for a first trimester screen to make sure all was well. I was devastated to learn that the baby had a borderline nuchal measurement (2.8-2.9) and worse yet, they saw a “cystic hygroma”. The perinatologist who came in told me, “This does not look like a healthy baby”. With a statement like that, it was hard to hold on to hope but I did a ton of research so I would be prepared. I learned 50% of babies with cystic hygromas do have chromosome abnormalities. I also learned, you need to go in for a fetal echocardiogram (heart u/s) to make sure there are no heart problems. We elected not to do a CVS since it was a little riskier, but did decide to do an amnio at 16w5d. We received our results back & we are having a healthy little girl. We still need to have more detailed u/s on the heart, but at my last u/s they said it looks just perfect. Also, the cystic hygroma appears to be diminishing & right now it just looks like a thickened nuchal fold, just like my son had. We did not have any hydrops or other abnormalities noted on any u/s. I hope my story can give hope to others out there faced with this diagnosis for their little one. There is hope that all can turn out OK. [ Post a Reply to This Message ]

[> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: anolani [ Edit | View ] Date Posted: 00:01:25 07/09/09 Thu hi..im very interested in your story. im 19wks preganant and just found out last wk that my baby has cystic hygroma. my baby is really swollen that they couldnt even tell its gender. they also said that its almost as big as it's body....i was just wondering how BIG was your cyst? and also was it a very scary deliver for your mother because the size of the cyst?? PLEASE REPLY cause we dont know what to do. they said we can wait cause they really dont think that our baby will survive being that im early & the cyst is really big, or i could have an abortion... THANK YOU FOR YOU RESPOND.... [ Post a Reply to This Message ]