I sent this out to 5 perinatologist that had emails online for a second opinion.
I hope that you don't mind me emailing you as I came across your email address on this website....http://www.smfm.org/index.cfm?zone=search&nav=doctor. I would like to tell you about my situation & I am hoping that you have some advice or can see us ASAP.
I am currently 21.6 weeks pregnant. I am being seen by Charlotte OB/GYN & a Maternal Fetal Medicine doctor at the Women's Institute. I went to my OB for my regular ultrasound 4 weeks ago. The tech told me that our baby was 1.5-2 weeks behind on growth but that everything looked fine otherwise. My midwife noticed our anxiety & scheduled a level 2 at the Women's Institute. We also had the AFP test done at that time. The results came back showing high risk for both Spina Bifida & Downs. We went to the level 2 appointment & our little girl was then measuring 3 weeks behind. The doctor told us that she thought there may be a bowel issue & a hole in the heart aside from the IUGR. So, we had an amnio & scheduled to see the pediatric cardiologist. Dr. Benske at Sanger didn't see anything wrong with the heart at that time but scheduled a 6 week follow up for 6/5/8 when Kayleigh would be bigger & he could see more. The amnio results came in & showed that there were no chromosome problems. So now we are left without cause. We went in for our routine checkup with the OB on Tuesday & they couldn't find the heartbeat. We thought that we had lost our Kayleigh. However, once they grabbed the ultrasound machine we were able to find a beating heart. Her rate was only 124 but she was sleeping. Today we went in for a follow up level 2 ultrasound. Everything still looked good with the baby. No problems that they could see with her except for the IUGR. In the last 3 weeks she has only grown 2 of them. I thought from our last appointment that any growth would be positive but that is not what we were told today. In addition, my amniotic fluid has drastically decreased. I am not sure what the level is as I didn't think to ask that question. Lastly, my placenta has detached a bit & has some old blood gathered. With all of these things together we were basically told that there are VERY high odds that Kayleigh won't survive. Maybe not even past a week. We are now scheduled to go to the OB every week to check the heartbeat. We were not offered anything that could help & were told flat out that there is nothing that we can do & I am tonight finding that there are in fact options. I also asked about bed rest & was told to not put my life on hold & to do what makes me feel good. My OB suggested that I have blood drawn for a TORCH titer which I did today. I had also seen research online that said that treatments were available if there were infections but when I asked this today I was told there are no remedies. I really hate to "complain" about my treatment but I feel certain that if a doctor told any of us that we would die we would get a second opinion. Unfortunately, I do not think my baby has very much time. I am not sure if I am in denial or if it is just intuition but I just don't feel that it is Kayleigh's time to go.
Please contact me ASAP if you know of ANYTHING that we could do, any doctor that we could see, or any advice. We are grasping at anything that we can. Thank you so much for your time.