pregnant-questions about cystic hygroma

[momma2b]

Hi I am 19 almost 20 years old and about a month and a half ago I found out that I am pregnant for the first time. Then a few days ago an ultrasound confirmed that I was pregnant with identical twins and that i am about 11 weeks along. Unfortunantly, on one of the babies (BABY B) they found an abnormal mass on the back of its neck and head. The other baby is perfectly fine and absolutly normal. The doctor wont make an actual diagnosis until i meet with a specialist. But she did say that it could and most likely be cystic hygroma. I have reasearched it on the internet and found alot of scary things about it. Now I am absolutly terrified about what is going to happen to one of my babies. Does anyone know any good things about cystic hygroma?? Am I going to have terminate that baby?, and if so will i have to terminate both or could the healthy one still survive? They share the same placenta but are in different sacs. My husband and I are so scared please any help will be greatly appriated.

[namu12]

Hello,

I am Namrata, i am 27 years and My baby had a cystic hygroma ! It was found at 10 weeks. yesterday i got abortion..

my question is, if i again get pregnant is it possible to have healthy and safe baby... or this disease affect my child again.....


Please reply me....

[namu12]

Hello,

I am Namrata, i am 27 years and My baby had a cystic hygroma ! It was found at 10 weeks. yesterday i got abortion..

my question is, if i again get pregnant is it possible to have healthy and safe baby... or this disease affect my child again.....


Please reply me....

[timslou]

The outlook for babies in the womb witt ch is very poor especially if hydrops is also pressent the high heart rate which usually accompanies the condition is the heart having to work harder.Unfortunately like most things if you overwork it then it usually runs out of steam and gives up.
I had the agonising news that our son had ch accompanied by hydrops 2 years ago now I chose to terminate as I decided I wouldnt want the children I already had to be in pain so I was not prpared to leave my unborn son to suffer either.It was the hardest decision I ever made and still look for answers even now my thoughts are with you all and as much as I wish the prgnosis was better it realy isnt good . All I can say is do what you feel is right in your heart dont be afraid to keep asking questions and if you can find the strength to hold your baby at whatever stage you deliver you will not regret it holding my son (Elijah) realy helped in the healing process and even though I feel I still have a long way to go Im further than I ever thought I would get because at first everyday felt like I would break into a million little pieces I wish you all strength to get through your days and weeks to come I wont lie they will be some of the hardest youll ever experiance please try and be strong and trust your own instincts much empathy to you all timslou

[viostrd]

I everyone, just want to get some idea from all.I am a new married guy and my wife just got pregnant 1 month 10 days , so my wife go see doctor and had Ultra scan for our baby , so doctor found the my wife got CH just next to our baby around 30mm size ... i was very upset, sad  donno what to do , and we been waiting to get a baby for so long... now we got but we had some CH ... Please to all what should i do.... :-(

[najma123]

i lost one of my twins at birth the one with the problems i thought id let you guys know and my other twin survived taddling along nicely and looks identical as his brother hes a spitting image

[najma123]

hi i am having identical twin both in one sack one placenta and they are boy i guess and at 15. 5 weeks one of my babys has cyctic mass near the neck and short limbs iv seen a specialist today and they say my babys skull has a whole and his brain is hanging out and his limbs are reaally smally and may survive and will be born servially handkiapp and die but the other is totally fine and as they are identical this should not happen but like all you out there i will listen to this and will carry on with this pregnancy and hope to have two beutiful boys like the one i have . i will pray to allah /god for all of you hope all goes well

[Angie718]

I wanted to offer some HOPE, so here's my story. At 12 weeks a septated cystic hygroma was discovered on my baby during my ultrasound (3.5mm I believe). The genetic counselor spoke in great length with us and gave us all the stats,etc and we were devastated. Basically we had a one in six chance of a completely healthy baby. Two CVS's were attempted but couldn't be done so we had to wait until 4 weeks after we found out the bad news to have the amnio. That month waiting was the worst in my life. They then discovered that the hygroma had disappeared and amnio results were normal. I had a
fetal echocardiogram and that turned out to be normal too. So I am now at 23 weeks with a healthy baby girl!
Please don't give up, there is hope. Please get a CVS or amnio to get a definite answer before even thinking about termination. Hygromas can resolve, even septated ones like ours and miracles can happen :-)

Angie

[twinsmcdaniel]

hello. i've been reading this topic and I'm glad I found some other mothers out there who are experiencing or having experienced what I am going through.

I am 13 weeks pregnant with twins. They are most likely identical. They are in the same placenta, but in different sacs. I had an ultrasound done at about ten weeks and every thing looked normal (it was done while I was in the ER and you know those ER techs aren't alwasy right on) and every thing was fine. The babies looked healthy and were growing. Less than one week later I had my first visit with the twin specialist and that is when we found fluid behind the neck. he didn't call it anything, he just told me that if it spread to the heart or lungs that baby wouldn't make it to full term but there are some cases when the condition resolves itself. He told me he wanted to see me again in six weeks and that I should think about doing amnios on my twins.

I looked up chromosomal abnormalities and did just a tiny bit of research and read that 90% of babies that present this early in gestation are born fine.

Then my regular ob/gyn mentioned that my baby has Cystic Hygloma. She didn't really explain what it was, we were there for a check up. She just told me to keep my next ultrasound appointment with the specialist and sent me on my way (I am serioulsy considering finding another ob)

This morning I have been researching CH and I am terrified at what I am finding. It is really making me feel so sick. I am trying to stay optimistic and hopeful because we've only seen one ultrasound and no tests have been done yet. I'm trying not to jump to conclusions.

I've decided that if the fluid level is the same or has increased by the time of my next ultrasound (Jan 29th) then I am going to go ahead and have amnios done.

For those of you who have lost your children because of this, my heart goes out to you. I can't imagine and I pray that my children will be okay.

For those of you who have children who have survived against the odds, it is really great to know that you are out there. It gives me hope.

Thank you all for sharing your stories

[HopefulMom2Be514]

Hi! I am 27  years old and have been told for 10 years that i may never conceive due to female problems. To our surprise we are pregnant. My doctor wanted to know exactly how far along I was so he sent me to have a UltraSound done this past Monday. The U/S showed the I was 9 weeks 6 days pregnant. Our baby was so cute it was moving around and it's heart rate was 176. good we thought. The lady doing the ultrasound took so many pictures of it's head I now realize. Our Doctor told us that it looked as though our baby has Cystic Hygroma or and he named a lot of other scary things. He told us that he made a appointment with a specialist fo me  to have a more in depth U/S done this coming Tuesday. Today is Wednesday and all I can do is read and CRY the unknow scares the hell out of me, I research in the morning before work and in the evening after. I want to be educated but it's hard to understad all of these syndromes. I am so overwelhmed and want answers. Until Tuesday I think reading all of your storys is going to educate me and calm a small piece of me knowing that we are not alone. It is so comforting. Thank you all for sharing your personal situations and thanks for listening to ours. I Pray for all of you and your familys.

*MOONLVER*  I do know a few people personally with HYDROCEPHALUS. My best friends son was born with Hydrocephalus without spina bifida He has had 5 surgerys and done well with each one and is now 11 years old and is in a accelerate class he is so smart. 2 of My Other friends each have a son who has both spina bifida and Hydrocephalus  they both are very smart and normal looking except for lower body Paralysis but with surgery and therpy they both have gained some control of their lower body. If you have any questions please ask.


Jamie a Hopeful mom2be

[MOONLVER]

I AM GOING TO 24 YRS OLD. AND THIS WILL BE MY 4TH PREGNACY, BUT ONLY HAVE ONE LIVE CHILD, I AM ABOUT 11 WEEKS ACCORDING TO MY ULTRASOUND. BABY HAS HAD A HEART TONE AND IS MOVING AND EVERYTHING BUT THEY FOUND FLUID IN THE HEAD SO THEY ARE ASSUMIMG THAT I AM GOING TO HAVE A SAB, THEY THINK IT MAY BE A CYSTIC HYDROMA VS HYDROCEPHALUS,BUT THAT IT WAS TOO SOON TO KNOW, AND IT BROKE MY HEART AT FIRST BUT I AM STRONGER NOW. IT STILL A CONSER, BUT I GUESS THERE IS NOTHING TO DO BUT WAIT AND SEE WHAT LIFE BRINGS. I STILL HAVE NO CLUE WHAT THAT IS

[tif1]

One of my dearest friends has a daughter with that. She is 6 now and has a trach and a feeding tube and has had many surgeries but is otherwise normal and happy. A girl in my office had an ultrasound where it showed it and they advised her to terminate which she did.  I do know with my friends daughter everytime they do surgery it grows back but she is seen regularly by a specialist and prognosis is good. Good luck

[webozo]

i am not sure how well things have turned out for you guys but i do have bit of good news for you i have a four year old grandchild that had a massive cystic hygroma. it covered all most his whole head and back. other than a webbed neck larger hand and feet than normall and a slight dvelopmental problem. he is a happy, and  healthy little boy. we did not get answers when my daughter was pregnant and we still don't have answers but he was a blessed gift and we love him dearly. the only thing we are worried about is thia was my daughters firsst child and with no real answers she dosen't know if she should have another child.

[webozo]

i am not sure how well things have turned out for you guys but i do have bit of good news for you i have a four year old grandchild that had a massive cystic hygroma. it covered all most his whole head and back. other than a webbed neck larger hand and feet than normall and a slight dvelopmental problem. he is a happy, and  healthy little boy. we did not get answers when my daughter was pregnant and we still don't have answers but he was a blessed gift and we love him dearly. the only thing we are worried about is thia was my daughters firsst child and with no real answers she dosen't know if she should have another child.

[truckercat]

Hi Cherie,

I am glad you found out you are having a girl, Faith is a beautiful name.  I have read about and keep hearing about couples with TS girls.  It seems like many of them can live fairly normal lives.  One woman wrote, maybe in this forum, or in another, about her TS girl. She may of found out later in her pregnancy about the TS, and decided to keep her little girl because of how strong her little girl was to have made it so far--she was fighting to be born.  I felt that same way with Kyra--how amazing that we fought together for 18 weeks--and I am so thankful for those precious 18 weeks I had with her in my womb.  Having a baby living with you for any amount of weeks is life changing--I will never be the same--now I am a mother with a beautiful daughter.

I am praying that you will have stength and endurance--that is what you need most for your heart right now, and for Faith's healing.

God Bless you--thanks so much for writing back--it is very healing for me to talk with other women who are going through the same thing--it means so much

Amy

[cherinsc]

THANKS so much for the love you poored out in your message truckercat!!   Got results from cvs today baby has Turner's sy.  so it'a a girl. Going to talk to genetisist tomarrow combination of cystic hygroma and TS could be bad, may not carry to term .Me and my husband decided we could not live w/ termination, and TS is really not that bad some very normal heart , kidney prob.'s scare me. I work in ICU at hospital and dialysis is a horrable life.If kidney that severe.    Anyways won't know much more for another 6 wks when I go back to spec. for indepth U/S. Please pray that CH is gone and that heart /kidneys okay that all we have to deal w/ is TS.  I am sorry for your loss, I hope you have many healthy ,happy babies in future.I though of adoption b/f all this if you have too go to adoptuskids.org and look at alll the children needing homes.I've decided not to paint the babies room (already primed) or get crib/clothes  till very late in preg cuz I know miscar. is a very real possibility and I don't want to have all that stuff and no baby to bring home.  sending out me love,prayers and thanks cherie PS: I'd like to name her Faith and thats what I must have!!

[truckercat]

Hi Cherinsc-- I am so sorry to hear about your u/s and the CH.  I am praying for all these women--lately Maricar and Tashauna (who will have follow-up u/s tomorrow.)  This is so hard and there is no way to fight--except through prayer.  God did not cause this problem or allow it--it just happens by nature, but God hears our prayers and He answers. My doctor gave us a 50/50 chance of keeping/losing our little girl, based on whether or not the CH was from chromosomal abnormality.  It was too early to do an amnio when we found out--so we just decided to pray and wait for an answer.  I wanted my little girl so badly--with or without CH, which we just found out she had Turner's syndrome from the chromosome tests they did after the autopsy.  

God showed me how to love my baby--even if she had problems--she is still my baby and I love her so very much. I think about her all the time and it's been a month since I delivered her.  I encourage you to listen to your heart, and to the doctors. I know it is hard--at first, all I wanted was for my baby to miscarry--to just be over--the nightmare and fear of having a less than perfect child--gone.  But through many signs, God changed my heart and showed me that I have so much love to give--to my baby, no matter the obstacles.  You have the strength, but you won't know you have it until the moment you need it.  you are already an amazing mother--you have planned and prayed for this child and you have a bond that is eternal. No test or diagnosis will ever change the relationship you have with your baby right now.

I am praying for a complete miraculous healing for your baby--I believe with all my heart in power of God's love.  E-mail me anytime, and if you need to talk I can send you my cell #--let me know

Take care,
Amy Savage
***@****

[cherinsc]

4 dys ago went for regular check up couldn't find H/B W/ doppler so went to U/S uterus tipped/inverted so hard to see so went vaginaly and saw my 12 wk baby dancin little arms and legs, face.U/S tech left room to get doc she said so he could see h/b but he came in and showed me that my baby had a CHygroma and they set me an appt w/ fetal spec. they u/s and worse it's septated and has fluid inbwn skin and ribs, good Hb though.I go in 2 dys for chromosome testing.You go from I can't wait to find out the sex in another 6 wks to am I even going to be having a baby and is there any chance it will be normal.The odds/stats are stacked so high against us.  I don't know if I can terminate.  Chrom. testing will help inform me better.  I prayed so hard for a baby now I pray for a miracle no chrom. defect /ch goes away or for a misscarriage.Because I don't know if I can make the decision to end it.   The only hope I've found so far is this page were some of you have had it resolve or misscar.  God Bless you all you will be in my prayers please keep me in yours  cherie

[truckercat]

Hi Maricar,

Thanks for sending me your e-mail, I will e-mail you soon.  Take care.

Amy

[Maricar]

Dear Amy:
I really appreciate your support and prayers.  I would be pleased to talk to you about this thing I am going through.  My email is ***@****.  This time on, I really dont know what to feel.  There are moments that I am loosing hope. But still I am holding on, hoping that tomorrow there might be a miracle. Every day, every minute I try to feel my baby if she  still moves. Many times, I asked God, why do I have to suffer all these same with my baby despite am taking care of myself, I do have a healthy lifestyle.    

Everytime I go to my weekly check up my heart beats so fast. Afraid of what my doctro will tell me again. It's really a traumatic experience!

Thank you again for your time and support.

Regards,
Maricar

[truckercat]

Hi Maricar--I am so sorry to hear about your baby--my heart just hurts so much as I read about what you have been through.  Please know that I will be praying for you. This is so incredibly hard--no one should have to experience this.  If there is anything I can do--I would like to help you--if you need to talk you can e-mail me or I can give you my phone number if that is helpful.  For me, it was important to talk to others and have them pray with me over the phone or in person if possible.  You cannot go this alone--you need lots of support--I cannot emphasize that enough. I am glad you found this forum--because it helps you feel as though you are not alone--so many women have been through this and they are survivors like you and I.  God has really given me a burden to pray and to talk with others who find out their baby's have CH, so please let me know if I can help you. You are important and your baby is important, special, and precious!

sincerely with prayers,

amy

[Maricar]

I too am experiencing the same situation you are in to.  My name is Maricar Guintu, Am on my 22 wks pregnancy.  I guess it was the worst and horrifying news I've ever had in my entire life when i went on my 3rd month prenatal check up on April 3, 2006.  My doctor was unable to get my baby's heartbeat thru the doppler machine, I even told my Dr. happily that maybe "my baby was hiding."  Until my Dr. requested me to have an ultrasound to check the baby's heartbeat. My doctor told me that my baby's h/b was only 93 and it wasnt on the normal rate. Then she had requested me to get a full ultrasound.  It's was like the end of the world for me when my doctor informed me of hte result of the ultrasound. She said my baby's abnormal heartbeat is due to an abnormality in my baby and that the baby has a cystic hygroma.  I cried and didnt know what to do and what to feel. On that same day, my doctor referred me to an OB specialist for 2nd opinion, I had an ultrasound again, the OB confirmed the same result that my doctor had.  On April 11, I had an amnio test. THe result was normal & and I have a baby girl.  Since then I told my doctor that I opted to continue my pregnancy as I was hoping for a miracle too that the hygroma may resolve by itself. But things get worst for my baby as she had a fluid build up on her abdomen and later on her brain which the doctor told me that it's hydrops.  I have read a lot of info about cystic hygroma also which I found them negative too.  I asked my doctor straight what is the chance of my baby to survive, she told me straight that soon my baby will die and she may not reach 6 mos. I get check up wkly to make sure that I dont have any complication and that if the baby dies in my womb she'll be delivered ASAP to avoid problems.  NOw am just hoping for a miracle even if my baby's heartbeat keeps on going down when I get check up wkly. My baby's hearbeat last Friday, 5/26 was only 42. I am still holding on for I know God knows what best for me and my baby.  

Maricar

[truckercat]

Hi Tashauna,

I am so glad you found this forum--it helped me so much too--to read there was hope and to ask others to pray--mostly to know I was not alone in this situation.  I will be praying for you and your baby. If you ever need to talk please let me know--you can e-mail me anytime at: ***@****.  Going through this experience brought me closer to God than I have ever been--He really provides extra love and comfort to His children who are brokenhearted and going through trials.  Please let me know how things go--I want to help in any way I can. It is great that you are reaching out and asking for prayers--that is what mothers do best--they fight for their children.

with love and prayers,

Amy Savage

[MomKnowsGodIsNControl]

Hello,
My name is Tashauna and am 18wks along. I had my first ultrasound done on April 13, 2006 and found out that everything was good and that I was at 12 wks. I went in on 5-15-06 for my regular 4 wk checkup and had blood work done for Down's and NTD. I got the call on Monday, May 22 that one of my test came back abnormal. An appointment was made for me on Wednesday 5-24 at 1pm. I had an ultrasound done, and the doctor informed me that my baby had a cystic hygroma, hydrops and ascities.
I was heartbroken when I heard the diagnoses. I just prayed, knowing the God is in Control whether this baby makes it to full term and lives a full and wonderful life or not.
     I have researched a lot on the internet. Everything that I have seen has been very negative. This is the first place that I have seen that has been inspiring. I know that God has a plan for this baby. I do not know what God's will is. I am expecting a miracle. This could be a test for my faith. It could  be that miracle that someone around me needs to see to bring them to Christ. Whether God is creating another Angel to watch over me and my family, I know that it will all work out ok.
I will be going back to the Dr. on 6-7-06 for a followup ultrasound.
For all of you that actively seek God in prayer, please pray for me and  our baby.

Thank you and God Bless,

Tashauna Stinson

[truckercat]

Hi Spider291--I just thought I'd check and see if anyone found this forum--cause I thought it might have expired or something.  Good to hear your story, how is your baby doing?  I am assuming that your baby's cystic hygroma was not a chromosomal abnormality--so what caused it? This is a question I never got answered from the specialist.

sincerely,
Amy Savage