We know Aria Joy has Down syndrome. What do we do about it?
Well this Type A, list-making, over-planning, goal digging mom knows we need a plan of action in place. It’s what will help me move forward, essentially evolve from coping to embracing, but will also give me something palpable to do while we’re waiting for Aria’s debut. Let me tell you, finding out the news at 11 weeks means that there’s a LOT of time to think, plan, and prepare which is much more productive than using that time to worry, stress, and grieve (not that I won’t still struggle with bouts of those last three).
A month after learning that Aria has Down syndrome, I’d taken in a good amount of information (again mostly via Dr. Google, DS sites, DS blogs, a couple of books), and I had a good list of questions going into my 15-week OB appointment. I’m sharing notes from my Prenatal notebook, in case it might help someone else with follow-up questions they’d want to ask their OB:
- Which Subspecialty Consultants will I meet with; who is recommended?
- Maternal Fetal Medicine Specialist (also known as a Perinatologist)
- Pediatric Cardiologist should there be a heart defect detected
- Geneticist we’ve made the decision to hold off pursuing this until after Aria’s born and her karyotype determines what type of DS she has…if in the rare case that it’s Translocation, then we’ll opt for additional testing to determine if this is something that might affect Mason and Dakota Kate
- Pediatrician we’re extremely blessed that our children’s current pediatrician is actually on the Board for our local Down syndrome group. He is extremely well-versed in dealing with babies and children with DS as well as having a softened heart and passion for caring for these children
- When will we have our Targeted Ultrasound?
- What about a Fetal Echocardiogram?
- Why is there an increased risk of stillbirth; is there anything preventative that we can monitor?
- The day the news was delivered, a C-section was suggested as our course of delivery to decrease putting additional stress on Baby’s heart and to give her a best chance at survival. If there are no heart issues and no signs of distress, will this surgery still be recommended?
- When will the non-stress tests begin? At what frequency?
- What are statistics for a NICU stay? Is this something we should anticipate?
