Cystic Hygroma (large NT@12 weeks)--not a good scan--Updated :)

[Chester1]

hi there gigglebox, i wish you all the very best it sounds like you are on a really good path now . i got my CVS results back and sadly its trisomy 18. i think this has been a really good forum to get hope and keep mums from going totally nuts with all the waiting. i will keep checking as i am interested to see how you go. take care xx

 

[gigglebox]

Chester, I am SO sorry. I was hoping beyond hope you would have some positive news. You have been so kind to be keeping up with me, and I would love to do the same for you. I am so sorry for the hard decision you have to make now; please know if you ever need to talk you can privately message me or post on this forum. My heart breaks for you, truly. I hope your healing process comes easy to you.

 

[sunbaby777]

hi there gigglebox, i wish you all the very best it sounds like you are on a really good path now . i got my CVS results back and sadly its trisomy 18. i think this has been a really good forum to get hope and keep mums from going totally nuts with all the waiting. i will keep checking as i am interested to see how you go. take care xx

Chester1 - I am so sad and sorry to hear the news. You must be devastated. There really isn't anything I can say to make you feel better. I know this from experience as I lost my daughter to Turner Syndrome at 19 wks. Please just know that you are not alone, and you have a lot of support if/when you want it.

 

[gigglebox]

just updating...had my regular appointment with the OB today. Got to hear bun again; he was moving around (you could hear him moving and popping on the monitor) and his heartbeat is at 156. Is it normal to slow down a little bit? Last week it was 168 I believe...

 

[Mon_n_john]

Yes Gigglebox, it is totally normal for the heart rate to lower a bit in the 2nd trimester. It sounds like a perfect heartbeat. How did everything look? Any improvement?

 

[gigglebox]

I didn't get a scan, just the doppler. My next scan is wednesday (the 12th). I'm hoping for some good news as an early birthday gift

 

[Mommy2be20]

It is normal for the heart rate to go down in 2nd And at my last MW appt, baby's was 135.. when typically on my doppler I catch it at 150-156bpm (at least every other night before bed). I questioned my MW about the slower rate and she said their hearts act like ours and s/he might've been napping causing a resting rate.. whereas I might be catching him/her wide awake at night. She also said anything between 110-160bpm is considered "normal" in 2nd tri.. hope that helps
And hurry up next Wednesday!!!! x

 

[gigglebox]

If anyone cares to read, here's the lovely e-mail I just sent to the radiology facility that did my initial NT scan

"To whom it may concern,

I was seen at your facility on Monday, September 12, 2011 for a routine 12 week NT ultrasound. During the ultrasound, I presume the technician saw an abnormal finding on the screen and consequently called the doctor in to review it. I do not remember the name of the doctor, but I am hoping you have it in your records. This doctor made my experience that is supposed to be one of excitement and joy a living nightmare. Upon reviewing my ultrasound he gave me a very bleak diagnosis. He stated that the increased fluid seen was a "Cystic Hygroma" and likely meant the baby had a Chromosomal Abnormality. His statements following were bold and definite. He stated it was almost certainly Turner's Syndrome. Needless to say I was devastated.

Perhaps in other circumstances he is a pleasant fellow, but that day he seemed very uncomfortable and eager to leave the room. After a brief discussion, he wrote down "Cystic Hygroma" on a post-it note, handed it to me, and told me to look it up online. He headed for the door to leave when I stopped him and asked if it was possible for this situation to resolve itself. He looked at the screen and said, "I don't want to give you any false hope. Sorry". He offered no comfort and did not waste any time leaving the room.

I understand that other patients of his might have had similar circumstances that resulted in a poor outcome, but the way he relayed the prognosis, with such sureness, was distressing. I feel that there was a more appropriate way to have handled my situation. He could have advised me that there was an abnormal finding on my ultrasound that COULD have been an indication of Chromosomal Abnormalities, however a definite diagnosis could not have been made with just that image. A suggestion to see a geneticist to do further testing would have also been more appropriate. If my appointment had been handled in this matter I would have still left the appointment upset, but at least I wouldn't have left with the mindset that I would likely miscarry or have to make the heartbreaking decision to abort my baby.

I wanted to let this doctor know that I am now just over 15 weeks. After appointments with my geneticist and maternal fetal doctor, my sonograms are showing that the Cystic Hygroma has resolved almost completely. My full CVS test came back normal with NO chromosomal abnormalities.

It breaks my heart to think that other mothers-to-be have had to endure the news I received on September 12th without so much as a sliver of hope that things could be OK. Sitting on the sonographer's table almost fully undressed and crying to my husband, "I guess we'll have to abort it, right?" was one of the worst experiences I have had in my life. That moment will forever be pressed into my memory. I am hoping through this e-mail that someone will be spared this emotional torture in the future.

Please provide me with verification that someone has read this e-mail and it will be seen by the appropriate person(s)."

 

[Mommy2be20]

Aw hun, I teared over that If that doesn't get passed along and taken into consideration.. then those people are just plain COLD! Good for you for writing to them and I hope something good comes from it! It's extremely disheartening how doctors treat people these days .. I too had an ignorant doctor tell me at 5w that I was going to miscarry, dead set on it! Well %&*# these doctors, they have NO right to brush us and our little miracles off like that! I honestly wish I had had the courage that you do to have addressed the doctor whom saw me as well, seriously though, good for you! x

 

[LisK]

Great letter!

 

[gigglebox]

Momm2be20--How can they assume at 5 weeks you'll miscarry?! That's crazy!

 

[Mommy2be20]

Momm2be20--How can they assume at 5 weeks you'll miscarry?! That's crazy!

Oh, according to the doctor it was a blighted ovum because no fetal pole was seen (yes, 5 weeks we all know that you shouldn't expect to see one!) And again like your case, it was what he said, no chance of anything progressing, done deal! He had the audacity to diagnose before my hcg had even come back.. once my numbers were in, he changed his tone a tad, but still negative! I've read this happening to other ladies on here too.. goodness it angers me how doctors jump to conclusions and are so insensitive about it! Do they not realize we love our babies as soon as we know they're on board?! x

 

[Mon_n_john]

It's unbelieveable a doctor would completely discount a pregnancy and deem it unviable at only 5 weeks! He should have his license revoked. I'm sorry you had such a terrible experience.

 

[gigglebox]

I agree, what a prick. I encourage you to complain to his superiors about his bedside manner! that is unacceptable.

 

[KendraNoell]

gigglebox- I am amazed by your strength and how this has all turned out for you. I have complete faith in your pregnancy continuing perfectly and that you will become a mentor to other mothers facing chromosomal abnormalities in their pregnancies. You have been presented with a gift, however crazily it happened, and I think you will go far with this

 

[Chester1]

to gigglebox, well done for writing a letter. it needs to be done. i have been thinking the same as i was treated appallingly. we mums go to scans expecting to hear good news and see great things. proper bedside manners in cases where all is not perfect obviously need to be taught as sonographers obviously lack human empathy in the job they are in! my life was turned upside down in the 2 weeks of waiting for my level 2 scan and CVS. it really felt like 2 months and if i had had a better sonographer with empathy it may not have seemed so dire. although i am not one of the lucky ladies i am so pleased to continue to hear great news of others. thanks to yours and sunbabys kind words. yes its a devastating time for us and am just enjoying the time i have with her. we have called her Celeste - it means heavenly. from heaven you came and to heaven you will return. thanks again for responding to me and my 'ravings' but in New Zealand there isnt really any forums for mums to be in such situations. cystic hygromas or diagnosed syndromes are fairly rare apparently cos of the population. i love hearing the good news though, it makes me feel great inside!

 

[KendraNoell]

That is a beautiful name

 

[gigglebox]

Thank you for sharing Chester--I don't think you could have picked a more perfect name. I love it.

 

[sunbaby777]

Awh....I love the name. Very heartbreaking situation though. I wouldn't wish it on anyone.

 

[sunbaby777]

If anyone cares to read, here's the lovely e-mail I just sent to the radiology facility that did my initial NT scan

"To whom it may concern,

I was seen at your facility on Monday, September 12, 2011 for a routine 12 week NT ultrasound. During the ultrasound, I presume the technician saw an abnormal finding on the screen and consequently called the doctor in to review it. I do not remember the name of the doctor, but I am hoping you have it in your records. This doctor made my experience that is supposed to be one of excitement and joy a living nightmare. Upon reviewing my ultrasound he gave me a very bleak diagnosis. He stated that the increased fluid seen was a "Cystic Hygroma" and likely meant the baby had a Chromosomal Abnormality. His statements following were bold and definite. He stated it was almost certainly Turner's Syndrome. Needless to say I was devastated.

Perhaps in other circumstances he is a pleasant fellow, but that day he seemed very uncomfortable and eager to leave the room. After a brief discussion, he wrote down "Cystic Hygroma" on a post-it note, handed it to me, and told me to look it up online. He headed for the door to leave when I stopped him and asked if it was possible for this situation to resolve itself. He looked at the screen and said, "I don't want to give you any false hope. Sorry". He offered no comfort and did not waste any time leaving the room.

I understand that other patients of his might have had similar circumstances that resulted in a poor outcome, but the way he relayed the prognosis, with such sureness, was distressing. I feel that there was a more appropriate way to have handled my situation. He could have advised me that there was an abnormal finding on my ultrasound that COULD have been an indication of Chromosomal Abnormalities, however a definite diagnosis could not have been made with just that image. A suggestion to see a geneticist to do further testing would have also been more appropriate. If my appointment had been handled in this matter I would have still left the appointment upset, but at least I wouldn't have left with the mindset that I would likely miscarry or have to make the heartbreaking decision to abort my baby.

I wanted to let this doctor know that I am now just over 15 weeks. After appointments with my geneticist and maternal fetal doctor, my sonograms are showing that the Cystic Hygroma has resolved almost completely. My full CVS test came back normal with NO chromosomal abnormalities.

It breaks my heart to think that other mothers-to-be have had to endure the news I received on September 12th without so much as a sliver of hope that things could be OK. Sitting on the sonographer's table almost fully undressed and crying to my husband, "I guess we'll have to abort it, right?" was one of the worst experiences I have had in my life. That moment will forever be pressed into my memory. I am hoping through this e-mail that someone will be spared this emotional torture in the future.

Please provide me with verification that someone has read this e-mail and it will be seen by the appropriate person(s)."

I'm so glad you wrote this. They SHOULD be held accountable for their actions. They just don't seem to realize the impact of their actions and words. Think about how many women terminated pregnancies because of similar situations - when it was possible that their babies didn't even have a serious problem! The lack of compassion is inexcusable!