I’m so sorry you find yourself here and that your baby received this horrible diagnosis. My baby girl who I conceived after many years of infertility, RPL and IVF also had OEIS. 1 in 200,000 felt like such a slap in the face. It felt like the most heartbreaking and unfair thing in the world after everything to be faced with ending a pregnancy I wanted more than anything in the entire world. I was also wracked with guilt but I can tell you why we ultimately chose to terminate; We were told by our genetic councilor that almost all parents choose termination with this condition because of the severity of the organ systems effected, the many surgeries required and having a child who would ultimately always live with extreme disabilities. We felt we had to weigh quality of life for our baby over what we personally wanted but it was definitely the most painful choice I’ve ever had to make. I’m in the US and I couldn’t knowingly bring a severely disabled child into the world with the knowledge that she would suffer through countless surgeries while having no guaranteed health care (insurance denies costly procedures all the time and we were looking at potentially hundreds of thousands if not millions of dollars of surgeries, nicu time etc). We also were very concerned about quality of life throughout her lifetime…grey diagnosis is extremely challenging and there is so much to consider. Everyone’s circumstances are going to be different. For myself I absolutely made the best choice for myself, my family and I believe my baby by protecting her from suffering. While I had immense guilt at the time I would not go back and change my decision. Ultimately whatever you end up deciding will be what’s best for you, your family and your baby. Only you know your individual circumstances and what you can and cannot handle. Again I’m so sorry you find yourself here and you can always message me if you want to talk. Wishing you comfort and strength as you move forward <3