Hi everyone..I've cut and pasted this from the Sept 11 board cause I'm too lazy to type it all again!
Hi Ladies...I finally feel like I am in a place where I can share with you everything that has been happening here lately. Its been a rough month.
Went to my NT scan, and it took forever. Didn't think anything of it, it was long with DD as she wouldn't roll the correct way. Got home that night, and my OB called. You know thats never a good sign. She told me there was a "measurement discrepancy" with the upper limbs. Mentioned something called Holt-Oram syndrome, which affects the growth of the bones in the upper limbs, and 75% of these kids have a heart defect. Referred me to a MFM specialist at work, who got me in 2 days later for a detailed anatomy.
Needless to say, we were devastated. I work in the NICU, I see what these kids go through with multiple heart surgeries, and I'm not willing to put my child through that (personal belief, not meant to offend anyone). Went to the anatomy scan and got more information. He got a good look at the baby's heart, and he didn't see anything abnormal. In fact, everything on the baby looks normal, until you get the bottom of the humerus on the right arm (the upper bone). The arm just stops. There is no forearm, no hand. He doesn't think its H-O syndrome, he thinks its an isolated defect, either from an amniotic band, or a clot. For whatever reason the arm did not develop below the elbow area. He recommended genetic testing to make sure it wasn't part of some syndrome, and wants to do a fetal echo to be sure about the heart.
We had CVS (chorionic villi sampling) done at 14 weeks (a few days later), and went to genetic counselling. They also felt this is an isolated finding and not related to anything genetic. Got the genetics results this week, everything is normal.
Had another scan at 15.5 weeks, just to make sure everything is still fine, and to measure the little arm. It seems to be growing appropriately, measures the same as the left, and the baby moves it freely. Having the echo next wednesday, and then the 19 week anatomy the week after. If everything is still fine, I will be discharged from the MFM and only see my OB from now on.
So...while I am very sad to hear this news, I am confident that this child can have a full and happy life. I've made contacts for us to talk to about dealing with this type of congenital amputation, with preparing for prosthetics, things like that. My DH on the other hand..he shut down. For 3 weeks we barely talked about it, he was distancing himself from the pregnancy, he basically felt that this was enough to consider termination. I don't agree. If there is nothing else wrong, then this is a healthy baby, and I will not terminate a healthy baby just cause s/he isn't perfect. We had a few ugly talks, to the point that I was worried about this seriously damaging our marriage.
I am happy to say we have made progress. He has admitted a lot of his fears to me, and they stem from his fear that he isn't strong enough to be the parent this baby needs, and that he worries this child will struggle to do everything in life. He wonders if its fair to "do this" to a child. He has agreed to talk to anyone I want to talk to, and we are going to get some couples counselling as well. I basically told him flat out that I won't terminate, and that I hoped he would still be here in the end. He isn't going anywhere, but he's terrified. I can appreciate that, as I come from seeing devastatingly sick babies everyday, so to me, its just an arm. He doesn't know anything but healthy kids, so this is overwhelming. More than anything right now I wish we hadn't found out so early. Its only because we found out at 13 weeks that we could even consider termination. If we found out at our regular anatomy, there wouldn't be any options. He said if we had found out then we would "just suck it up and deal"....so I told him thats exactly what I need him to do.
So...I've struggled with whether to post this news. We've shared it with some close friends, and my parents know. We haven't told his family as his parents were in Arizona, and he didn't want to worry them while they were away. They are back now, so I think he will be telling them soon. I don't want people to think he's a terrible person, cause he is an amazing father. He's just having a tough time with this. Not that its been a walk in the park for me, but I at least have the benefit of being a nurse, being connected to the baby already, and having the ultimate say in any decisions cause its my body. I can't be forced into a situation, the way he can.
Sorry this is so long! If you made it through, thank you! I promise I'll post more, I'm here everyday, just haven't been posting. Keeping my fingers crossed that no one else gets any bad news around here.
update is that today I had my fetal echo, and the heart looks completely normal. Very relieved!