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Subject: Cystic Hygorma Author: Lisa [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 07:58:21 03/19/03 Wed My husband and I have been ttc and with the help of a wonderul dr. and his staff we finally did. \nEverthing was going the way it was suppose to until, last \nThursday when the dr. said he notice a nuchal translucency on the baby's neck. \nWe immediately called our OB(who just happened to be high risk) and explained the situation. He had us do another ultrasound and it was confirmed that the baby does have a lateral cystic hygroma. A CVS was done the same day. We are now awaiting the results. Our Dr. said we have one \nof four outcomes........1) Down Syndrome 2) Turner Syndrome \n3)Normal/healthy baby 4) normal baby with cardiac problems. \nAt the moment I am feeling really down, however, yesterday I felt really good and positive. There are so many things \ngoing through my head. My husband is being really great about this, he is keeping strong. \nPlease Help! [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> Subject: Re: Cystic Hygorma Author: Shellie [ Edit | View ] Date Posted: 10:41:35 03/21/03 Fri Lisa, I know this a difficult time for you, I'm so sorry you have been faced with this. I hope you will feel some comfort here as we try to offer support and encouragement. When you hear that your baby has a problem it can be so heartbreaking. In our mind we start thinking that all are dreams for this child are gone. But in reality, you can still hold on to those dreams! I'm going to leave you with a link to a website put together by parents who were given a similar diagnosis. I hope it helps you to see a child that is surviving and doing well. READ STORY SEE PHOTOS Lisa, I will write more later. Please know that you're in my thoughts and prayers! Take care, Shellie [ Post a Reply to This Message ]

[> [> Subject: Re: Cystic Hygorma Author: Lori [ Edit | View ] Date Posted: 07:11:26 03/23/03 Sun Hi, I'm sorry that your being faced with this situation. I know what its like to be pregnant and fear that something could happen to your baby. I had hematoma of the uterus when I was five months pregnant and had to stay on bedrest for four months. I was always worried that something bad would happen. Basically I think going through this kind of experience makes you a stronger person and makes you love and cherish your child ten fold. Here is one website dealing with Cystic Hygorma: http://www.edmondsmd.com/lymphatic_malformations.htm A really good website to go to is: www.benotafraid.com http://www.hopefulwomen.com/jasmineshope.html Please if you need to talk I'm here, there is hope. I will keep you in my prayers, please keep us updated and let us know how your doing, and how the baby is doing. Take Care, Lori [ Post a Reply to This Message ]

[> [> [> Subject: Re: Cystic Hygorma Author: Janay [ Edit | View ] Date Posted: 11:34:54 01/25/04 Sun [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Shelly [ Edit | View ] Date Posted: 06:59:17 03/22/03 Sat Hi Lisa, Although my son had a different problem, I understand what you are going through. When I had my first ultrasound at 30 weeks there was no fluid and the bladder and kidneys were huge. We were told this baby would die and there was nothing we could do. My son will be 11 next month. His life has not been easy. Lots of surgeries, dialysis, kidney transplant. But he is a very happy boy! It was hard to deal with all of the extra stuff involved in his care, but he was our first child and it just became normal for us. I had a therapist as well to talk with. I've suffered from depression my whole life and when my son was born it seemed to make things more gloomy for me. Looking back, everything was worth it. Of course everyone wants to have a perfect healthy baby, but sometimes that just doesn't work out. Sometimes we get someone who is actually better. A baby that teaches us to value every day and take nothing for granted. I can understand the stress about TTC for a long time too. I'm pregnant with our second child after TTC for 8 years. I'm scared to death there will be something wrong with this baby, but in my heart I know that if there is, I can deal with it. Bryan made me a much stronger and understanding person. There is an e-mail list I'm part of that is for parents of children with special needs. They've got kids with just about everything you can think of! Feel free to check into it. It's a great group. http://www.our-kids.org Take care and good luck! Shelly [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Moncia [ Edit | View ] Date Posted: 07:47:13 03/22/03 Sat Hi Lisa, Sorry I didn't post sooner -- I hope you are still checking messages! I just wanted to tell you that vacillating btw feeling positive and feeling dreadful is completely normal. It will probably be this way the rest of your pregnancy. I have to tell you that's in the norm for a pregnancy w/o a poor diagnosis, too -- but the diagnsosis really intensifies things. You probably know by now if your baby has TS. I wanted to share a support group w/ you that serves women who are expecting a baby w/ TS. Even if you baby does not have TS, they may be able to give you some info about the CH. The second link is to a story written by a woman who has a daughter born with CH. They found out late in pregnancy -- not the daughter is 17 yrs old and doing very well. The article is very honest about how the CH has affected this young woman's life thus far -- I hope you'll get a chance to read it. If you want to be put in touch with the mom, you can email me and I can put you in touch, okay? http://groups.yahoo.com/group/ts-pregnancy/ http://www.benotafraid.net/article.asp?id=14 I will be keeping you and your baby in my prayers. I hope you feel comfortable writing back and telling us how things are going! Again, sorry for the delay --- I need to check here more often. Sincerely, MOnica [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Michelle [ Edit | View ] Date Posted: 12:28:13 03/22/03 Sat Lisa, I read your post and it brings back the memory of a year ago when I received a suspicious report after my 12 week u/s. The nuchal translucency measurement was elevated and they were worried about Downs or Trisomy 18. I was very scared because we had also been trying to conceive for several years. We have a 9 year old daughter also. I had to have another u/s at 15 weeks and things looked better so we were more relieved. Then I had a 22 week u/s and the nightmares started. The baby had a heart problem and some other problems that showed up. They convinced us to have an amnio to see what was wrong. WE did and it was Trisomy 18 which is one of the worse chromosome problems for a baby. They told me she probably would not live to be born and to abort. After a lot of prayer and discussion we chose to keep our baby and let God decide when it was her time to be born and we prayed for her to be healed. It was a very hard pregnancy knowing that the odds were against her but I felt good about my decision to keep her. I hope I am not making you feel worse about everything but I did want you to know that I do know how you feel and would be happy to talk to you at any time. It helps so much to talk to someone that has experienced something similar. Our daughter was born March 5, 2002 and she looked so perfect just really small. A little over 4 pounds. Everything on the inside of her was too small and had not developed properly. She had a hard time breathing and did not cry very much. WE go to spend 3 precious hours with her and we were so proud of that time. My daughter was right there with us and held her and bathed her and we all did this together as a family and it really helped. I won't tell you that it was not the hardest thing I have ever dealt with but our faith grew so much during that time and we did have peace even though we had lost our daughter. We still miss her so much and will always think of her. We are thankful that we now a year later had a beautiful healthy baby boy born one day after she was born, March 6. I was scared at first but things went so well with this pregnancy. We would have never known the wonderful blessing of our son if we had not experienced the loss a year ago. WE don't understand why God took her but he did bless us again and we are so thankful for our son. He is so perfect and precious. I will enjoy every minute with him. I pray for you and your family that you will get a good diagnosis and that maybe it will not be anything real bad. Sometimes u/s do show up things that are nothing to worry about. Leave your little baby in God's hands and he will take care of you and your family. Please let me know how things are going and know I will be thinking of you. Love, Michelle [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Ashley [ Edit | View ] Date Posted: 21:00:34 03/22/03 Sat Hello. I will admit right up front that I don't know anything of this particular condition. However, my son (now 10) was born with spina bifida and all the goodies that come with it and I tell you it can be quite frightening, esp. in the beginning. However, as having been on this road for nearly 11 years now, I want to tell you from experience that you are about to embark on a wonderful, challenging, heartbreaking journey in your life. It is the beginning of some of the most trying, yet beautiful areas of your life. From my experience and having spoken to hundreds of other parents raising children with disabilities, these children are nothing short of blessings. In the beginning, you may mourn for the child that "might have been", but let me tell you, reality is better. These kids truly change your life for the better. I realize and know that this seems unfathomable to many, esp. in the beginning, but I promise it does come! You know, my son has muliple medical problems and more than his share of surgeries, etc. But I tell you, in all my years I've never met a more strong, willful, humurous caring person in my life. (Except for other children with disabilities). They are truly amazing gifts. Please, take the time to realize that while your child may have a disability of some kind, this is still your baby! This child, like any other will need love from his/her parents, understanding and compassion, just as any other child. God Bless, Ashley [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Lisa [ Edit | View ] Date Posted: 07:37:28 03/27/03 Thu I am sorry that I did not read my emails earlier. Thank you for all your prayers and positivity! Well on Monday we were told that we are going to have a girl with TS. I have to tell you that I was so releived when it wasn't anything more severe. Yes, she has a chance of developing serious problems, but I have to keep the faith and hope that this is the only curve ball that will be thrown at us. I have been doing a lot of reading on TS and there are a number of woman that have this disease, most of them don't even know that they have it. I had an ob appointment yesterday and she looks fine. The doctor said she was growing just fine. The hygroma was still there but smaller. I would love to update you on her road to the real world. If you could email me to my yahoo address that would be great! Thank you all for the support! LGonzalezNenadich@yahoo.com [ Post a Reply to This Message ]

[> [> Subject: Re: Cystic Hygorma Author: Melanie [ Edit | View ] Date Posted: 13:51:11 03/27/03 Thu Hi Lisa, I am glad to hear that the news was not all bad. I have since done some reading on TS as well, and it seems very manageable for the most part. The fact that the hygroma is smaller is very good news indeed! I would be delighted to hear about her progress. I will try to e-mail a bit later today when I get a chance. --Melanie [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygroma Author: Pat [ Edit | View ] Date Posted: 00:43:25 03/29/03 Sat Lisa, I have to agree with the people who said that having a child with a special need causes a family to grow. I have a nephew with Down Syndrome, and we know exactly why God gave him to us. He has been such a phenomenal blessing to all of us. In fact, I'm a little bit jealous of my sister because she got him and I didn't! Children with special needs bring out the love and compassion in us, and reward us with unconditional love. It's a win-win situation. The important thing is to welcome them and care for them diligently, and in the end, the blessings will far outweigh the problems. Truly, it is a special privilege to be given one of these children. Hugs, Pat [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: maria [ Edit | View ] Date Posted: 17:14:03 05/02/04 Sun Hi, I was told three days ago that my baby has cystic hygroma. I'm in my llth week. And we are confused and I'm scared. This our first pregnancy and we went through alot to get pregnant. It took us 1 year 1/2 and we had to do IUI three times and finaly it worked with IVF. So know we find out that our baby has this. Would anyone know what the chances are of me having another one. Scared, Maria [ Post a Reply to This Message ]

[> Subject: Re: Cystic Hygorma Author: Lacy [ Edit | View ] Date Posted: 12:27:22 01/13/05 Thu I had my ultra sound at 18 weeks and found out that my baby had cystic hygroma. I am not sure what to do, my doctor told me that I could abort the baby now, or I could just go into labor, which would happen in the next 4 weeks. I am trying to find good specialist to get second and third opions but cannot find anyone. So if anyone as any ideas or information, please e-mail them to me as soon as possible. Thank you so much Lacy [ Post a Reply to This Message ]

[> [> Subject: Re: Cystic Hygorma Author: Monica [ Edit | View ] Date Posted: 06:41:17 01/17/05 Mon Hi Lacy, I'm really sorry to read about your baby and the cystic hygroma diagnosis. I'm trying to figure out why your dr has given you this 4 week window -- are they saying that your baby's system is failing in some way? Otherwise, that sounds pretty strange. I'm very happy you are getting a second opinion. If you can email me, I can give you the email/contact of a mom who has a 19 yr old with cystic hygroma. They discovered her daughter's hygroma just barely prenatally -- when they did they delivered her right away (but this was late in pregnancy and baby was viable) so they could treat her. She had surgeries to remove the hygroma -- it was apparently quite large and embedded. It was touch and go with her baby early on . . . but she made it! She lives not too far from me and either just started attending college/university or has for a year (I haven't been in touch for over a year so I'm not quite sure what she's up to). Anyway, apart from giving you some hope that the CH doesn't always have to end in death, I thought maybe the mom might be able to help you find a specialist . . . Hope to hear from you! Sincerely, Monica [ Post a Reply to This Message ]