Just wanted to share an update since some of you asked me to do that. about 3 weeks ago at our first ultrasound, we learned that our kiddo had a significant problem with his bones (size & shape). The radiologist diagnosed it as fatal on the spot and recommended termination. We are lucky in that we live near a bunch of major medical centers and got hooked up that same day with high-risk perinatal folks at a hospital. They performed a 2nd ultrasound that day, had a followup one last week, and they've been checking out the pics and possible diagnoses.
Right now it still looks very likely that the skeletal dysplasia (e.g. bone problems) our kiddo has will be fatal because his little chest isn't growing fast enough to make room for his lungs to develop and work once he's outside of me. We are doing some genetic testing to see if they can identify exactly what the illness is. It has helped to have 2nd opinions and more careful time to review the information available. We are strongly considering carrying to term, but are also worried that he'll be more and more squooshed the bigger he gets, and we worry about him suffering and not being able to help him.
**One of the big things we have learned (there are many) is that medical professionals are not always very good at understanding how you see your role as pregnant parents making medical decisions for your kiddo. In our case termination was recommended immediately and repeatedly without mentioning other options, like carrying to term even if the condition is fatal. This is what we are weighing. I'd recommend in Any case that you remember that you are your kiddo's parents. Medical professionals provide their insights but you decide how to make medical decisions for your kid, as his or her parent, and for yourself.
Some of the most helpful folks we have talked with are a Perinatal Palliative Care team. They are a team of doctors, nurses, a social worker, and a chaplain who exist specifically to help families with tough care decisions, and who can take a palliative care / hospice approach with babies who are basically terminal. They have "seen it all" and helped answer a lot of (nitty gritty) questions for me. They also help w/ things like navigating insurance and finding outside resources. And acknowledging that you actually have feelings and need to talk them out. We are lucky in that our team will continue to support us whether we terminate or carry to term. Here's some info on PPC... a lot of it has some religious undertones / assumptions going on which I personally try to filter out some, but the information is very helpful, especially since no other medical provider presented it to us at all until we found this website and found that our hospital actually has a PPC team! In other regions I know folks were assigned a special nurse the second they got a tough diagnosis. It all varies. https://perinatalhospice.org/Perinatal_hospices.html
Another big thing we are learning is there are a lot of awesome resources out there for little people. We've been checking them out because if our son makes it he'll be little. Also there are a lot of bone dysplasias out there, often as a result of random mutations, so it's not always easy to diagnose them or to predict outcomes. Our experience has been kind of weird in that people have tended to rush to diagnoses or to suggest termination before checking out all the available facts, or before sharing them with us. I wish people would ask how much you want to know, before making that assumption.
Just wanted to thank you all for your thoughts and prayers, and for continuing to crack me up on the Sept board.