⚠️ WARNING ⚠️ extremely long post, but please take the time to read.

Back at our 20 week anatomy scan, we were informed that our little girl did not develop a right hand and the specialist immediately ruled out any amniotic band syndrome or scarring. We met with genetic counselors out of a very reputable hospital here in Chicago, and we were told that this happened by chance and there was no further concerns of any other abnormalities because she was measuring well everywhere else. They offered an amniocentesis, in which we declined, because of the risks that came along with it and the fact that they said they do not see a reason to have it done, but the offer was still on the table. We have had routine growth scans every 4 weeks since due to the hand abnormality.

At our 24 week scan, her head and belly were measuring slightly off, but this was of not concern. We were also informed that her right forearm was lagging by 3 weeks, again, of no concern because “the measurements can be off due to the baby’s positioning”, is what the MFM specialist told us immediately after the ultrasound. No further diagnostics were to be completed at this time.

At our 28 week scan, the MFM specialist was not there to explain things to us after the scan, but I was paying attention to the measurements. Her right forearm was now measuring 5 weeks behind. I panic and spoke with my OBGYN the following day at my appointment and she promised to have the MFM specialist reach out so I have answers. She also mentioned that the specialist and her had spoken after my previous ultrasound and had mentioned possibly seeing some amniotic band. MFM specialist calls and explains that the baby’s right arm was pressed up against my placenta, so he believes that’s where the short measurement came from and in no way is he concerned about anything like skeletal dysplasia, as the rest of the baby is measuring appropriate to gestational age. He also denied seeing any amniotic band from this ultrasound.

32 week scan-again, no MFM specialist present to explain findings after the ultrasound. I received a call from my OBGYN a day after the ultrasound and she mentioned that she spoke with the MFM specialist and he is now seeing that both of the baby’s arms are measuring in the 5th percentile, but we won’t definitively know what exactly we are dealing with until the baby is born. I am able to access my chart via an app on my phone and I reviewed it after getting more shitty news from my doctor. I read “suggestive of skeletal dysplasia”.

Now I am panicking. Our little girl is due in 8 weeks and I am getting all of this news dumped on me when this stuff was considered ruled out from previous scans and discussions with these doctors. Of course, I google skeletal dysplasia and find that there are many components of this disorder. One of which is lethal and indicates that half of the babies born with SD are born stillborn or pass away within 6 weeks of birth. I am beyond confused, scared and terrified.

If anyone has had an experience similar to this, please, PLEASE share it with me.