cystic hygroma

[janet1414]

my daughter is 11 weeks and was just diagnosed with cystic hygroma.  what are the chances of the baby surviving?

[kaz2502]

hi janet my son has a cystic hygroma on the left side of his neck and he is 8 mths old

[monie219]

When was your son diagnoised? I am 14 weeks and they have diagnosed a cystic hygroma which is getting larger and the doctors are recommending a termination?

[Team_Marley]

. I was expecting the worst, but to my surpise when that little heart popped up on the screen flickering away, I cried. Then we saw arms, legs, a little face.. The guy said all looked great.. He then took some measurements of the nuchal fold,  he did not say a word about any of the measurements, and sent us on our overjoyed way It was about 3pm, my heart sank... He immediately told me the news from the scan was not good. you have a 1/42 chance of your baby have downs syndrome.I was crushed. He then went onto say, you have to have further testing. You need to have an amniocentesis.  I then received another call from my dr, he said I could not have the amnio for another 4 weeks as i was only just 11 weeks. He then said i could have a CVS i researched it and the odds were better than that so I agreed. with DR ramsay the following tuesday. I researched the **** out of her, and was confident they had found the best. We had to go to my dr and pick up the referral, along with the ultrasoubd report before we left. Ofcourse I read it.. "Extremely large nuchal thickness of 5mm, idicitive of a serious issue. No nasal bone was detected and possible omphalocele. Genetic counselling and further testing is strgonly recemmended .. WHat?? so out came google.it is a type of abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall...We went into the room, and explained things to the sonographer. Her face looked grim. We immediately saw the massive nuchal fold, it was worse. She did however EVENTUALLY find a nasal bone, confirm that all stomach contents were inside the cavity, her heart was beating, all else looked completely normal.. The Dr came in and broke the news to us that the nuchal fold thickness was now 6mm instead of 5. She proceeded to do the CVS, . She then began to talk about Turners Syndrome, . I had read alot about it, most of the time the babies do not make it past the first 12 weeks, ours had.. the usually have other defects, none of which they could find. they are always infertile, But who cares, as long as i can love my baby, and they are happy, we will go ahead... SHe then went onto say, we didnt have a 1/42 chance, we now had a 50% chance. we got a call the next day... "hope, its Dr Ramsay, I have some great news, its clear".. and wer are having a girl.. this first part of the test ruled out downs, turners, trisomy 13 & 18, the rest of the test that ruled out ALL other chromosonal abnormailites would take 2 weeks 2 weeks later, we found out that the cells they had taken, on a rare occassion do not grow in time to be read at 2 weeks, well ofcourse this was our case.. so 3 weeks passed before we got our results... message was left on my mobile, "Hope, is Dr Ramsay, we have the final results form the CVS and its good news", i knew this meant it was all clear... WOW!!.. our daughter was going to be fine, we knew there were some other things to look for,  I woke up and my all day sickness had eased, Nath and I were off for a follow up scan, we were finally going to see our princess again, only now though, we had not much to worry about... I could hardly contain myself on the way up... We were tkaen into the room, where the sonographer had found out about the CVS and was all smiles... until the first shot came up on th screen.. there was our babies head, with a MASSIVE fluid sack around the back of it. it was as big as head head. I knew immediately what it was, as I had done some research, nathan had no idea but he did know it wasnt right. It was a cystic hygroma. THe only time i had seen them was on pictures of babies (about 18 weeks) that hadnt made it. I couldnt breath, again. The sonograhper continued with the scan, to look for other problems. She then found a small amount of fluid in her lungs, and around her abdomen. This wasnt good. On the up side, her spine was intact, she was measuring right on time, her limbs were normal length, all of her fingers and toes accounted for, her kidneys were functioing, her heart had no detectable abnormailities, and her face was the most beautiful thing, none of this was much of a consolation though.... she could not find her bladder at this time. Dr Ramsay, who entered the room as she would a funeral. She told us it wasnt good. I asked her where it came from and she said im sorry, at this stage we have no idea.  I said, but she isnt going to make it??.. Her head tilted towards the ground and shook ever so slightly. Our daughter was going to die, is what they had just told us.   We decided no matter what, the life we had worked so hard to create, was not going to end in our hands. So, we went into the "bad news room", The Dr entered, and I immediately said we are not terminating, no matter what., She looked grim. I asked what do we do next. There were several things it could be, a virus that I had somehow passed onto her, like an STD, but normal prenaatal blood tests rules those out, it could be Pavo or a barage of other things.Most fatal to her.  The next step, was to do a full heart scan @19 weeks, If she made it that far. It was made clear to us the chances her her heart just stopping before that time were immense. After that, at 22 weeks we see a peadiatric cariologist to have an echo done on the heart. At this atge, we were told again her chances of survival were next to none. We didnt waiver. we then had to wait to go back in to try and find tha bladder. fortuntately they found it.. We left the office in a blur. I immediately pulled out the ipone on the trip home and began googling cytic hygroma. th news wasnt good,. all medical journals painted the same picture as the dr's. I rememeber seeing on the blood test referral form *hydrops* i wondered what this was, it went onto say *where cytic hygroma is presented along fetalis hydrops, the mortality rate is 100%*, yes all babies who have this condition, die in the womb. wow. When we got home, my obsession with research began, I managed to find a few websites with success stories..
so where do they get 100% mortality from??????? The truth is, the vast majority of parents who get this diagnosis, take the advie of termination, which in the depths of despair, and the way the drs talk I can understand. It was never ever ever for us though. My OB wanted to see me yesterday as I expected, he doesnt hold any hope she will make it past 20 weeks. If she does, he agrees we should deliver in Sydney, after determining what specialists we need at delivery, I made it clear to him,we are well aware of the statistic, and the chances of her passing are much higher than the chances of her making it, but my point to him was THERE IS A CHANCE!He went on to say, ok so you are going to let nature take its course and let her pass naturally.. NOOOOOOOOOOO, " i said i am going to let nature take its course and give her a chance to live"at the ned, he said, after all you have been though hope, I am so sorry its turned out like this.. i replied buy saying, it hasnt turned out like anything yet, she is not gone so dont treat her like she is" he is a good guy he has just never seen a baby survive it, I How can they be so sure of an outcome where they are lucky to see 1 patient a year diagnosed, thats right, the statisitcs are 1/4000 babies have it.. so, i did some simple math..:)she had a 0.025% chance of getting it, and up to a 5% chance of beating it.... so, she is 200 times more likely to beat it than she was to get it...  So, at the moment, we are waking up every morning and listening to that glorious thumping in our fetal doppler.

[Team_Marley]

oh, i didnt realise how big that was.. im sorry...

[7thheavn]

You and your husband and your wonderful angel is in our prayers. Stay strong and God blessed. God speed xxoo

[purpletuzita]

GOD blessyou you are a good mommy keep us updated please.

[Team_Marley]

Thankyou, we will keep you updated,....


GO TEAM MARLEY!!!!!!!!!!!