I’m going to share with you a small part of my story. Yes, some of it is sad but I’m not sharing for you take have pity. I hope this part of my story is eye opening and educational to you. I hope it helps increase your awareness for the need for more funding and research on this disability.
My story begins back when I was 21. I got pregnant (OOPS) and decided I was going to do this! I had my regular doctors on my side and an OBGYN I had been seeing my whole life and their education on SB was me. Haha
I quickly got used to the idea of having a baby and fell madly in love with this little person inside of me. Even though for 6 months it was quite the challenge. I was VERY sick. My kidneys stopped working. I had tubes coming from my back to carry urine to bags strapped to my legs that would get clogged all the time and have to be replaced while I was awake…WIDE AWAKE.
My kidneys got so infected that I went into septic shock and could have died. But I didn’t! Finally, I was home feeling well and had a regular check up where the doctor told me there was no longer a heart beat. I was 6 months along… I couldn’t believe it. My body had failed me, I was less of a woman.
Now fast forward to when I was 34 and met my now husband. I informed him I thought I could not have children due to SB. Although he dreamed of having kids, he loved me more. WOW!
We married and decided to do some research to see what our options were. We were so lucky to find a whole new team and they had worked with pregnant SB women who had the same complications I had in the past and they had healthy babies. We went for it! During this pregnancy I was diagnosed with PTSD, was nervous and scared the entire time. Every minute was like a lifetime, but I did it! With an amazing team of doctors and my hubby supporting me, everything was OK. Don’t get me wrong, I still got very sick this time but the outcome was much better. Now I have the perfect little family and I feel like my body isn’t a failure. I am perfect… Perfectly imperfect as I like to say.
So, I can’t help but feel like this may have been avoided the first time if there was more research, more support. Had there been more shared amongst the medical community to help educate them about how to care for a pregnant Spina Bifida patient, we could have been a family of four.
This is one reason why we are here today to talk to you.