Pregnancy + A Complicated Medical History
To start, I'd just like to thank anyone that sticks with me and actually reads through this entire post. It's my first one and I know it will be a long one simply because it's impossible for me to explain everything in a concise manner. To those of you who reply, an extra thank you. I realize that no one is likely to be able to answer my questions definitively, but just knowing that there are others in a similar position is enough for me.
I'm a 25 year old married female. I've been with my husband for 7 years, married for 2 1/2. We've known from the start of our relationship that we want children, but with my health issues, we were never sure how exactly that was going to happen. Over the past few months, I've decided, along with my husband, that pregnancy is the route that we would like to go.
A *brief* medical history: I was born with spina bifida, though it was/is relatively mild compared to what it could have been. I grew up able to walk and really had no limitations. The only "difference" that I really noticed and felt was the fact that I had to wear leg braces to help with walking and balance. When I was about 3 years old, I started to develop scoliosis. Due to the fact that I was still growing, surgery was not an option and I spent my time in a back brace until I turned 12 and they performed surgery. 2 rods were placed, mainly to stabilize rather than correct since the degree of the curve was so severe at this point. Fast forward 4 years when I was 16, and part of the hardware had shifted and was causing pain. After consulting with my surgeon and being reassured that my spine was fused and removal of the hardware was a safe decision, I had the rods and all associated hardware removed. Two months following my recovery, I started to have trouble walking. After 7 months in the hospital during which I lost the ability to walk, move or feel my legs at all, I had 7 unnecessary surgeries (including a tethered cord release - this was likely the most unnecessary of them all as it had been stable my entire life). Finally, my surgeon discovered that my back had quite literally broken in the middle where it was fused and so any movement that I made caused swelling which put pressure on my spinal cord, causing the symptoms I was experiencing. This lead to 3 rods being placed, and the eventual fusion of T1 - L2. I still suffer from difficulty walking, though I have made significant progress, going from needing a wheelchair to being able to walk small distances without assistance and others with the aid of a walker (and recovery is still ongoing - I see progress regularly and am hopeful that I will eventually no longer need the walker).
In summary: At this point, my back is fused from T1 - L2, I still have a significant curvature (I believe it's around 65%) and at times need assistance walking.
My neurosurgeon has said he sees no obvious reason why I shouldn't attempt a pregnancy, though he has warned me it won't be easy and bed rest will likely be necessary towards the end (which both myself and my husband are completely fine with). I have an appointment with an obstetrician that specializes in high-risk pregnancies on January 10th so that I can ask some questions, but I suspect that I won't get very many concrete answers and it will be more of a "I'm willing to follow you throughout but I can't make you any guarantees".
What I'm looking for here is the ups and the downs, what the ramifications of the pregnancy might be on my body,so anyone willing to share, please do!
Thank you so much.