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Subject: Re: cystic hygroma-hydrops any help please!! Author: Laura Walla [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 13:40:24 03/07/03 Fri In reply to: Monica 's message, "Re: cystic hygroma-hydrops any help please!!" on 21:47:22 01/22/03 Wed >Hi Carole, > >I'm so sorry that your brother and sil are facing this >terrible diagnosis. And yes, the negativity coming >from the medical community is HORRENDOUS! > >May I simply suggest providing stories to them, maybe >your brother initially, since your sil seems to be >shutting down. There are lots of stories out there -- >you have seen some good ones already on this prenatal >diagnosis page. There are others, too, that feature >families having to deal w/ drs' negativity -- I >suggest the story "Amazing Grace" at >www.benotafraid.net as well as the article "Witness to >Love" on the same site. Your brother and sil need to >know that others have gone thru the same thing -- and >that others have come thru it. Perhaps the baby did >not survive, but when the parents were able to take >control of the situation, they were at least able to >value the time they had w/ their child for the >remainder of the pregnancy. They sometimes refer to >this as "the gift of time". > >I really wish your brother and his wife peace and the >strength of their convictions as they face this >situation! > >Sincerely, Monica > > > > >>Hello, >> My sister in law, Jill and brother in law, Ron, >>found they were expecting.. which was such a joy.  >But >>unfortunately a few weeks ago (during a sonogram) >they >>found complicatons with the baby.  After seeing a >>specialist and other tests they were informed that the >>baby >>was diagnosed with Cystic Hygroma.   This week after >>the last sonogram it showed the baby was surrounded by >>fluid.  The baby's head is lemon shaped due to the >>fluid pressing against it's temples, there is fluid in >>the lungs, the kidneys are under developed and >>they feel it is best for them to just terminate the >>pregnancy. >>          Ron is a strong Catholic and very Pro Life,  >>Jill, I know >>feels the same way.. but the medical field keeps >>telling her >>to terminate the pregnancy and she is being torn now >>with >>what to do.  After reading and hearing of different >>cases >>it seems there still can be a small ray of hope that a >>miracle >>could happen and the baby be normal.. but in either >>case.. >>I'm very worried about Ron and Jill now, being torn >>with >>what to do or not do.  Jill has gradually been closing >>up >>and not answering the phone.. going out to see people >>and now wants to go away "alone" for a few days to >>think things over.  Which I don't think is a good >>idea.. >>        Ron and Jill are both in their early 40's.  >>They just >>got married Feb of 2002, this is both their first >>pregnancy. >>They are wonderful people.. very caring for others >and >>pretty much strong stable people.  But I am as I said >>before >>worried about Jill's mental well being.  She has >>"alot" to >>think about and has had mostly negativity thrown at >her >>at this point.  If there is anything you could pass on >>to >>possibly help them in this situation, I'd be ever so >>grateful. >>Thank you so much for your time..  Take care!  >>God Bless!! >> >>      Carole Eichner Carole, I understand what your brother and sister in law are going through! At my 20 week ultrasound it was discovered that our baby had a very large cystic hygroma. My best piece of advice is to follow your heart. Give the baby a chance. Doctors don't always know that terminating the pregnancy is the best thing. We were advised to terminate our pregnancy. I would not have done that just because she was not perfect. She deserved a chance. She was born on September 12, 2002, had a 13 hour surgery at 13 days old. Was in the NICU for 4 months. We brought her home on January 7,2003. She has been in the OR 10 times. It has been a long road, but she is a beautiful baby. It takes alot of faith, courage, love, support and prayers. Babies are very strong. I wish your family well. Please correspond with me if you want any more details. Thanks and may God Bless You all. Laura Walla [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Leslie [ Edit | View ] Date Posted: 18:13:19 09/24/03 Wed Hi. I am going through a similar situation and I was wondering where your baby's cystic hygroma was located? Our doctors have not discouraged us from carrying the baby, but stated that with the cystic hygroma and hydrops that was seen she has a very small chance for survival. Did your baby have hydrops also? Any information you could provide would be appreciated. We are torn as to what to do. Thanks, Leslie Smith [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 17:21:47 09/26/03 Fri Hi Leslie, I responded to Laura's message awhile back. There is a message board for women who have an ubborn baby dxed w/ Turners syndrome -- and with this there is often cystic hygroma, and sometimes fetal hydrops, too. I'll give you the url in case you want to drop the community a line and see if some of those moms went thru something similiar. It doesn't look very active right now, but probably the moms will respond if you leave a message: http://groups.yahoo.com/group/ts-pregnancy/ I hope things will turn out well for your baby, I know this is scary! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Laura Walla [ Edit | View ] Date Posted: 20:51:15 09/26/03 Fri Leslie, Hello! I am sorry, I have not checked this board in sometime. Our daughter Avery was born on 9-12-02. Her cystic hyrgroma was located on her neck and was half the size of her at birth. She did not have Turners' syndrome or hydrops, so unfortunately, I don't know much about either one. Please feel free to check out her website at www.babiesonline.com/a/averyannw/ You will see that there are very happy endings. I wish you and your family all the best. Sincerely, Laura Walla [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Leslie [ Edit | View ] Date Posted: 17:18:02 09/29/03 Mon Thank you everyone for responding to my message. I have an update since I last posted. I spoke with my doctor on Friday and the results from my CVS test came back with normal chromosomes. Which is good for this baby and future pregnancies. The doctor is saying that this baby still has a small chance, but that if we see a decrease in the hydrops and the cystic hygroma that chance becomes much greater. I go for another sonogram in two weeks, and I am very anxious. I keep hoping and praying that everything will turn out fine. We found out that we are having a little boy. We had thought previously that it was a little girl because we thought the baby would have Turner's syndrome, but since the chromosomes are normal that means there are no chromosomal syndromes. Please let me know if anyone else has experienced this, and even if you haven't I would still like to keep in touch. Thank you again for your prayers and thoughts. We need all we can get. Leslie [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 19:48:17 09/29/03 Mon Hi Leslie, Well it must be a relief to know that your baby boy doesn't have any chromosomal syndromes! Take any good news you can! We will be praying that the hygroma goes down and the hydrops resolve . . .hoping your next update is good news! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: leslie [ Edit | View ] Date Posted: 17:25:44 09/29/03 Mon Laura, I was wondering how your daughter is doing, if she has had an surgeries, or if she needs to. Your story gives me hope, even though Avery did not have hydrops. I hope she is doing GREAT!!!! Leslie [ Post a Reply to This Message ]

[> [> [> [> Subject: Dear Leslie.... Author: Shellie [ Edit | View ] Date Posted: 18:35:12 09/27/03 Sat I'm so very sorry that you are going through this! I'm sure you are very devastated. I will be praying for a good outcome for your little one. I'm going to give you the link to a story about a little boy born with Fetal Hydrops: http://clarionherald.org/20021106/art003.htm I would love to talk with you more, so please feel free to post here or e-mail me directly. Thoughts and prayers~ Shellie [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Michele [ Edit | View ] Date Posted: 12:29:06 09/28/03 Sun Leslie, I'm praying for you and your little one. I hope you keep posting or email some of the ladies here to get support. Take care!!! Michele [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: joanne ritson [ Edit | View ] Date Posted: 04:25:04 01/06/04 Tue hi, for the past few weeks my life has been an emotional roller coaster.our baby had alarge cystic hygroma on the back of its neck at my 7 week scan up until 18th dec i was advised the baby had some sort of chromosomal abnormality.we demanded a second opinion as i refused intrusive tests that could risk miscarriage. i was also advised termination as the size of the hygroma indicated severity of condition......dont give up a scan yesterday confirmed the hygroma had gone also the babies heart and lungs are now fine and baby is growing normally.i cannot believe a few months ago all was doom and gloom and now there is a much better out look on things.i am 22 weeeks pregnant with still a long way to go but im not giving up.all the best of luck you are in my prayers [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Aimee [ Edit | View ] Date Posted: 12:43:01 01/09/04 Fri hi there. I just found out on Jan 2nd that our baby has cystic hygroma, we got a 2nd opinion & yesterday had an ultrasound. The results were not the same now they say possibly down syndrome,because the thickness around the neck is compatible with downs. My hubby and I have decided to go ahead with amnio now because 2 tests show 2 different things. I was scheduled to have the pregnancy terminated on Jan 14th. I can't help but feel that there is nothing wrong with our baby because of what is happening but I don't want to get my hopes up either. Somebody please write back Aimee [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Melanie [ Edit | View ] Date Posted: 22:26:18 01/09/04 Fri Hi Aimee... I hope that you are right and nothing is wrong with your baby. Sometimes that does happen. As for cystic hygroma, it is not necessarily fatal. Here is a link on it, although you may have checked this out already: http://www.emedicine.com/ped/topic536.htm This site allows you to have contact with other families that have disabled children by condition: http://www.cafamily.org.uk/Direct/c95.html As for Down's Syndrome, the effects can be extremely mild, to severe. I know that doctors usually give the worst case scenarios. http://www.cafamily.org.uk/Direct/d30.html I hope these sites help. --Melanie [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Pat [ Edit | View ] Date Posted: 02:13:07 01/10/04 Sat Hi, Aimee, I have a nephew with Down Syndrome. You can read about him here: http://www.seghea.com/becky/down/downsindex.html Here's another page I'd like to recommend: http://www.nas.com/downsyn/holland.html Having a child with Down Syndrome means that your blessing is simply very different. If you have a child with DS, you can count on having a child who will teach you and your family unconditional love. You can count on a child who will also love you unconditionally, a child who will reawaken your sense of wonder, and a child who has a mission in life. You will not necessarily have a child who is seriously mentally retarded. People with DS do think differently, no question about it. But they can be very, very bright. Too bad one of my favorite TV shows is no longer being aired: Life Goes On. The actor who plays the person with DS actually has it. He is obviously intelligent and well educated. My nephew is also very intelligent. He tested out with the language development of a five year old when he was 3 1/2. The key to helping a child with DS be as "normal" as possible is early intervention. When you go to my web site, please feel free to email my sister and pick her brain on that subject. She's a walking encyclopedia on it. So if you seek early intervention programs, pay close attention and work with them and use your own wisdom, and you insist that your child be given intellectual training first and foremost, your child will almost certainly do well. I'm actually jealous that my sister got my nephew instead of me. :) And Melanie is right. False diagnosis of DS is not that uncommon. If you have an abortion, you may well be aborting a normal, healthy child. Not only that, but having an abortion could make you prone to having a child prematurely in the future, and that could cause that child to have cerebral palsy! If, on the other hand, you have a baby with DS, and you can't cope, there's a waiting list of interested prospective adoptive parents. So try not to worry. Enjoy your pregnancy. Your doctor doesn't have a right to rob you of your joy. Regardless of what happens, we'll be praying for you, and we know that God will sustain you. Your baby is depending on you for your protection, and you are the only person who can protect your baby. I urge you to protect your baby. Hugs, Pat [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Jenni [ Edit | View ] Date Posted: 07:25:44 01/10/04 Sat Hi, I remember when I was pregnant, my doc asked me if I wanted to get any tests done for DS or anything else. I asked her about the DS test and she said that it, as well as many other tests...including Amino (which can be risky for the fetus and sometimes mom), often have false positives. She told me how she was told that she was going to have a baby with DS, when she was younger... and she didn't even have a babyshower or anything like that. However, her child was born without it, a huge suprise to everyone. I actually used to work with disabled children and actually think that the people with DS and Palsey are the luckist of all. As children and even adults, they are sheltered from all the stressful junk in life. The always contain a sweet naiveness. Next time you notice a disabled child, instead of focusing on her differences, look at her demeanor. I think you will find these children always smiling and giggling...they have the positive outlook on life that we "normal" people often spend a life-time looking for. Who's to say that we are the "normal" ones anyways? My life is anything but.... Peace, Jenni [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 21:48:32 01/11/04 Sun Hi Aimee, Wow! I can only imagine that pins and needles doesn't even begin to describe what you are going through right now. When is your amnio -- have you had it yet, and if so, when are you expecting the results? The most productive thing you can do right now, in this waiting time is to take a look at the resources we've been offering. Every prenatal diagnosis is an absolute shock -- it always requires you to reorient yourself -- but none of us are really prepared to do that. That's why it's so good that you are turning to other people for help. Now what you really should do is get in touch with parents. Here is a good start -- and check the resources page for more places to look (as well as those already mentioned by the gals who posted): http://www.benotafraid.net/story.asp?id=24 I'll be anxious to hear what your amnio says!! Hang in there! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Yvonne [ Edit | View ] Date Posted: 11:20:52 10/09/03 Thu Hello Everyone, My husband and I are in the same situation as Leslie. We have recently been told the devestating news about our baby. The doctors informed us that the baby has Cystic Hygroma with hydrops. They told us that the baby will die before being born. We were schedule for an amnio today, but I didn't want to go. I thought the information obtained from the procedure would only tell us what the doctors has told us. It has been comforting to read all of the personal stories. There is hope and relief to know that we are not the only ones going through this situation. I am a firm believer that God creates a life for a purpose and I can't terminate this pregnancy. I am not sure if the baby has Turner's syndrome, but it would be intresting to know. Please continue to write I am in need of support from families who share similar history. Thank you all. Yvonne [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: crystal- fetus with hydrops and mosaic turner syndrome [ Edit | View ] Date Posted: 22:07:08 05/02/07 Wed I am wondering how your outcome is?? My unborn baby has just been diagnosed with hydrops and mosaic turner syndrome and we are having to make the desition to terminate or to wait for our baby to die. I cant seem to bring myself to terminate if there is any chance of survival. I am 21 weeks and very small in my tummy. I hope that maybe your story may give me some peace of some type. [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Andrea [ Edit | View ] Date Posted: 03:51:01 12/19/03 Fri Finally, a website that can help me find people who can relate to our situation. Two weeks ago at 19 wk ultrasound our baby was diagnosed with cystic hygroma. Also noted was edema in the limbs and fluid on brain and in lungs. After much deliberation we opted to continue the pregnancy and turn the outcome over to God. We had an amnio done yesterday, and the Dr. had to take fluid from the hygroma b/c there was not enough amniotic fluid. We feel the outcome will be fetal demise, but our doctors have prepared us that it could several weeks or even full term. We have accepted the outcome, but are very anxious for closure. I think that is what makes the decision to continue the pregnancy a very hard one. Fortunately, we have a beautiful two year old daughter who fills our time and our lives with much joy. To anyone dealing with this or other pregnancy difficulties, we wish you may find peace during this holiday season. Andrea [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Victor v [ Edit | View ] Date Posted: 18:35:13 03/10/04 Wed HI everyone , i have a daugter wiht this problem (cystic hygroma)in her neck and I'm desperate if some one can send me information about pediatric doctor's around el paso tx who's treat this desease .please i need help. V.V. [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Jess huppatz [ Edit | View ] Date Posted: 04:20:47 10/20/06 Fri Hi everyone, I am currently 16weeks+5days pregnant and have recently been told via an ultrasound and amnio that my child has turners syndrome as well as having a cystic hygroma on her neck that is relatively large. I've also been told that I have low amniotic fluid. Can anyone please provide me with any information in regards to success rate of survival, or whether large cystic hygromas can shrink. We have been told to likelihood of our daughter surviving is low and to let nature takes its course. Please help. Jess [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 10:22:55 10/20/06 Fri Yes, hygromas can shrink, so don't give up hope! Here is just one example: http://www.benotafraid.net/story.asp?id=82 . The thing to keep in mind is that you aren't going to be able to do this with stats because the stats are extremely grim. What does that mean? It means that while many people who carried a baby with hygroma and TS lost their baby, it also means that virtually everyone who did not lose their baby with cystic hygroma and TS were told that they would. In other words, the numbers will not offer you the hope you are looking for - what will is the very real fact that there are survivors, despite what everyone expected! Cohen (http://www.benotafraid.net/story.asp?id=102 ) had a prominent hygroma as early as 12 weeks. He survived. (His mother reports that he has cerebral palsy, something that was not known until he was several months old - but that he, and importantly, they, are doing very well.) Jess, what kind of help have you been offered so far? Has the dr been able to give you any first hand stories of survival or is this the first time you are encountering the possibility? [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: jess [ Edit | View ] Date Posted: 22:52:36 10/20/06 Fri Hi Monica, The Dr has given my husband and I some counselling and some advice. We are about to see the neonatalogist and the genetics Dr. I have read many articles and stories in the last few days and I still haven't given up hope. My husband and I are letting nature takes its course. If my daughter is to remain here on earth she will. I would like to thank you for your support. Jess [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 12:13:14 10/21/06 Sat I hope that your baby is one of the survivors, Jess! Please know that you will be in my prayers (I'm sure everyone who reads here will be praying for your baby). [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Michele [ Edit | View ] Date Posted: 23:22:34 10/21/06 Sat Jess, I just want you to know that I'm praying for you, your husband, and your precious baby. We are here for you anytime. Michele [ Post a Reply to This Message ]

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Gina [ Edit | View ] Date Posted: 09:17:57 08/18/08 Mon My husband and I were just told after having an ultrasound (at 12 weeks) that our baby has a large cystic hygroma. We haven't seen the perintologist yet, but I am fearful of what they have to say. The doctor said all the things I am hearing that most of your heard, as possibilities, but I am not giving up nor would I EVER abort. Could anyone give advice and prayers? Thanks :) [ Post a Reply to This Message ]