Asking for prayers, advice, referrals, or anything that may help....terribly upset UPDATED 9/25/09

i'm sorry for posting such a personal story under my fake name still but we haven't shared this with many of our loved ones yet.

i am 11w3d today. in the beginning of my pregnancy, the doctors thought i would miscarry (for several reasons) but our little bean proved everybody wrong when at 6 weeks we heard the heartbeat. the doctor put me on progesterone supplements and i had 3 follow up ultrasounds where everything looked good except for the fact that the baby is measuring a week behind (and i know for SURE the date the baby was conceived). at 8w5d the ultrasound showed the baby of having a heartbeat of 167bpm and growing nicely (although still a week behind).

yesterday we went in for a routine doctor's visit. they wanted to take a quick look on an ultrasound again for a heartbeat (which was not scheduled but ok with us!) the baby still had a strong heartbeat (165bpm) but there is a large cyst on the baby's abdomen we were originally scheduled to see a perinatologist today for the NT scan so they squeezed us in immediately yesterday and we went from the doctor's office to the hospital to see the perinatologist. they did a more in depth scan and saw the same thing......a large mass on the baby's abdomen. everything else checks out fine, but the mass is now the major issue.

the perinatologist spoke to us after the scan and said since it is so early in the pregnancy he cannot tell which organ the mass is coming from so he can't really say what is the next step however because it is so large he feels it will compromise other organs, such as the lungs. he said we could do a CVS which would not tell us anything more except for whether its a chromosome related issue and beyond that we basically have to decide whether to terminate the pregnancy or not. he felt that the prognosis is "not good"

DH and i are beside ourselves with grief right now. we don't know what to do or think and all the doctor's say it's "our decision" but can't tell us much more since they really don't know what the mass is. we asked for a second opinion and my obgyn gave us the name of a radiologist to see. we booked the appt for friday but now we are wondering why we wouldn't get a second opinion from a perinatologist since they are more knowledgeable with this kind of thing. so now we are just confused and sad and feel like we have nowhere to turn.

i don't know the point of this post except to ask for advice if there is anybody out there who has been through something even remotely similar. or, if anybody knows the name of a good perinatologist....we live in westchester but will travel to anywhere on LI. or, some prayers and hugs would be good too.

thanks for listening to anybody that made it this far....i know this post is SUPER long. sorry.

UPDATE 9/25/09: thank you again to everybody who replied to this post and for all the absolutely amazing women who FM'd me with their stories. even though i'm still posting until my "secret" name and it's taken me a long time to update this post, i've drawn a GREAT amount of strength from all of you

i am sad to say that we went in for a D&C yesterday. last week we met with dr. kofinas in garden city for a second opinion and he told us with no hesitation whatsoever that he could not recommend continuing this pregnancy. despite the horrible news he gave us, he was wonderful and spent a long time looking at our little one with the ultrasound. the cyst or "fluid filled structure" that had formed in our baby's abdomen was taking up the ENTIRE abdomen to the point that the baby's belly was already grossly distended. he said the structure was blocking the proper formation of the urethra, bladder and he showed us that it was pushing down and crushing the kidneys already. what was even more heartbreaking is that he tested the blood flow to the baby's heart and he could tell that the arteries were being compressed by the structure and the blood flow was severely constricted. he told us that he has seen this in a few babies but they were always around the 20 week mark, not 12 and this is the earliest he has seen such a large anomaly of this nature. he said if it had happened later on in the pregnancy he could've tried to drain the structure but since none of the baby's organs have started to form, this was not an option for us. in fact, he believed that the baby would die in utero soon if we continued on. we really wanted not to believe him but it was clear from the beginning that this guy was top notch and was not distorting the truth in anyway. he gave us the worst news of our lives and somehow we still left there in awe of his talent and professionalism.

making the decision to go for the D&C was the hardest we've ever faced. we know that there will be people that may judge us for this, but in our hearts we know we did the right thing. having seen the picture with our own eyes, it was clear the baby was not doing well and was in distress. all of this said, i'm a little bit of a mess. i've been home from work since the initial diagnosis on 9/14 and i haven't done much except for lay on the couch and cry. my DH and i have shed more tears than what we believed was possible. i feel very lost and very out of touch with the outside world and feel like i won't be able to exist once i have to go back to work and function each day. i have moments of clarity where i feel like i am going to be ok, and then in the very next moment i fall apart. DH and i both know we are on a long path to healing. we want so badly to be parents but we've decided to wait as many cycles as necessary (emotionally) before TTC again.

thanks again to everybody for all of your prayers and hugs. they mean more than i can possibly express. for the women that FM'd me and i haven't replied, please know that i will respond soon, i am just working up energy and courage.

i wish you all happy and healthy pregnancies and hopefully i'll be with you all on the parenting board soon enough.

Message edited 9/26/2009 12:58:18 AM.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I'm so sorry! What a difficult situation you are being put in..

I don't have any advice except to definitely get those second and third and even fourth opinions! Find out as much information as you can.. and then go from there.

Lots of hugs and prayers!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so sorry that you are going through this. I have no advice or recommendations (except to get a few more opinions as mentioned above) but just wanted to send some hugs & prayers your way.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

Im so sorry you and DH are going thru this. My prayers are with you!!!! Def get a bunch of other opinions so you will feel confident in your decision, whatever that may be!!

Good luck!!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

This is SUCH a personal decision but since you've come on here for our thoughts, I'll send you prayers
and say it sounds like you have a little fighter in there. For me, I couldn't terminate on a what if.
I'm sorry you have to make such a difficult decision

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I'm so sorry It's a tough decision to have to deal with/make.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so sorry you are being put in this situation. I see a perinatologist affiliated with University Plaza OB. I know a lot of women use this group. Can't really say how good the perinatologist is since I have only met her once so far, but its another opinion if you want to call them. The number is 516-794-2200 and they are in garden city. Its dr michele reed and dr sophia streete-smalls. They have a web site too www.msfamilyhealthcare.com


Good luck and I am praying for your little one.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so very sorry about what you are going through. I agree with the other posters. Get second third and even 4th opinions if you have too. I also would want to be sure before I would terminate. My hopes and prayers are with you!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I agree with the other posters and would definitely get another opinion. I am not sure where you are located, but if you need a recomendation for another peri, I have seen Dr. Stone and Dr. Edleman at Mt. Sinai in Manhattan. I highly recomend their practice.

Message edited 9/15/2009 2:09:03 PM.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I'm so sorry. I also don't have any great advice except that I would def. get a 2nd even 3rd opinion. Call your doctor back and ask why he wants you to go to a radiologist, just so you are comfy knowing why you are going there.

Many prayers

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I wouldn't know what to do I am so sorry you and your husband are going through this

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

lots of hugs and prayers your way!!!!

since what they said isn't 100% i would continue to get more information/opinions in order to be able to make the best informed decision u both can make for yourselves.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

many hugs for you, DH and your little fighter

I would definitely look to get 2nd opinion. I wish I could refer you to someone but I don't know of anyone. Stay strong!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

i would absolutely get a second opinion. i am sorry you are dealing with this. i don't have any referrals but i wish you the best of luck!!!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

maybe they gave you the radiologist to get a better kind of scan? I would go and see what he/she can see, and then go over the results with your doctor. and another doc to get a second opinion.

I don't have any referrals for you..but I do have lots of these and these

no doubt this will be a difficult time for you and your dh. please lean on us for support.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

Just offering my prayers for you and your family. I would definitely get 2nd & 3rd opinions. A similar thing happened when my mom was pg with my sister and she got a 2nd opinion and it turned out to be not as bad as they thought and once my sister was born, it actually cleared up on its own. (just using this as an example of why you should get more opinions)

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so sorry I don't have any advice. All I can offer is lots of prayers and hugs.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so sorry this is happening.

Dr. Alexander Kofinas is considered the top perinologist in the area. I highly recommend that you see him. His statistics are absolutely beyond impressive.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I have no advice...but many many prayers!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so very sorry. I would get a second AND third opinion and I would keep going until I knew some more information about the mass. I and sending you many, many prayers

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

The only perinatal referral I can give you is Madonna. I go to the one in Suffolk County, but they have an office in Mineola as well.

Many prayers for you, your family and your LO

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

Im praying for you. Get a second opinion please.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I don't have advice but I just wanted to say that I'm so sorry to hear this and will be that everything is ok.

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

I am so sorry... I can relate to how you're feeling.. I agree with the PP in getting a second, third and even fourth opinion! It def sounds like your little one is a fighter for sure!

Keeping you and your little one in my prayers... Through everything we went through (my DH and I had a major scare in our pregnancy) it was so helpful to talk about it, rely on each other, and to seek out whatever support you both need. Here are many hugs for you... I am so sorry again!

Re: Asking for prayers, advice, referrals, or anything that may help....terribly upset

thank you all so much for your prayers, hugs and information. at the end of the day today, i called dr. kofinas' office and we got an appointment for friday. i feel much better knowing that we are going to see such a highly regarded perinatologist. even if we don't get any different answers, at least i know we are doing all that we can to help our bean. thank you all again for such amazing support. we will update when we know more.