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I had the wonderful opportunity to photograph the most beautiful mother and daughter duo. This was a very special session that was near and dear to my heart. Amanda and Alianna are two of the strongest people that I know. Their journey with spina bifida is one that truly motivates and inspires me. I wanted to give Amanda the opportunity to share their story during Spina Bifida Awareness Month (October) with the hope that it will touch the hearts of those that truly need it the most.
“I found out Alianna had spina bifida a week after my 20 week routine anatomy scan. They told me she was a girl, but they didn’t tell me she has SB. They called me a few days later to go in to get more pictures taken. That’s when I had a gut feeling I knew something might be wrong. The doctor came in and said, “there’s something wrong with your baby, she has spina bifida.” I’ll never forget those words because they are the only words I heard while she was in that room. I couldn’t stop crying and I didn’t even know what exactly spina bifida was yet! I just knew it was something that was going to rock our worlds.
They gave me three options, surgery on her spine after she’s born, surgery while I was still pregnant, or abortion. I had till 24 weeks to decide. I felt selfish to bring a child into this world with a life long disability. I also felt unqualified as a mother. I didn’t think that I could handle my daughter going through therapies, medical treatments, doctor appointments and surprise surgeries for her entire life. I had all these thoughts on my plate and decisions to make at 19 years old. But, I knew right away that I didn’t want to abort her, because she was kicking her legs in the ultrasound. I believe that was her telling me to give her a chance at life!!
We went home to google spina bifida. It was a horrible mistake until I came across a picture of a beautiful little girl with long blond hair and a beautiful scar on her lower back. The caption said, “60-90% of babies are aborted with SB, who would want a child with a scar on their back?”. It was obviously sarcastic. But, I believe that was God saying that Alianna was going to be beautiful and that she’s still going to be my daughter and be absolutely amazing and just have a scar on her back too. I felt there that we could handle anything that came our way!
I researched the fetal surgery, and saw the amazing results from the study. 80% more likely to not need a shunt, and I believe 20-40% more likely to not need any sort of help when walking (like a walker, crutches or braces). I will never know how the surgery benefited Alianna and her quality of life, but I just knew in my heart I wanted to do anything and everything in my power to give her the best chance at life! The 3 hour long surgery was scary, but as I rolled in the operating room, I felt God’s unexplainable peace fall over me and into my heart. I knew things were going to be ok.
A risk to having the fetal surgery was possibly going into preterm labor. My water broke early at 31 weeks but I was able to stay pregnant on strict hospital bed rest until 34 weeks pregnant! I gave birth to Alianna Isabel July 6th 2011 at 10:02 am! She only needed to stay in the NICU to gain weight for 12 days. She was absolutely PERFECT and beautiful… with just a cute little healing scar on her back.
She was carefully monitored for her mild hydrocephalus and we thought we avoided a shunt since we passed the 1 year mark of not needing one. But, at 14 months she needed to have an ETV surgery where instead of placing a shunt, they drilled a hole to drain the fluid buildup into her third ventricle. So far we have not needed any revisions or had any scares when it comes to her brain!
When she was almost 3 years old she lost function in her left foot, so we needed to have tethered cord surgery. She needed a revision, a second surgery less than a week later since the first incision kept leaking. After that, she stayed laying on her tummy for three weeks but I was able to pick her up and hold her for the first time on Mother’s Day. It was the best present if you ask me! Ever since then, we have been so gracefully lucky to not need any surgeries! Praise Jesus!
She does need assistance walking and wears cute little pink braces with dragons and fairies on them. She also needs help using the bathroom via catheter and cone enema. It was scary to me at first thinking that I needed to do this for her, but we adapted, learned and rose to the challenge. It really isn’t that hard once you get used to it and she now is learning to catheterize herself! Soon she will be able to head to the regular bathrooms at school and just keep a small tube of a lipgloss sized looking catheter in her pocket so no one will ever really know she empties her bladder differently.
The doctors initially told me she might not ever be able to walk and would need to be in a wheelchair her whole life. But, today she loves to swim by herself, rock climb, do gymnastics, climb monkey bars and trees. She loves and appreciates life and I do not regret my decision to do anything I could to make sure that my daughter has the best life possible given her circumstances. I never treat her like she can’t do anything, I let her try for herself. I have always tried to make sure she was as independent as possible at an early age, despite the desire to keep her in bubble wrap and do everything for her. This has all helped her self confidence and she walks around not letting her disability hold her back.
To wrap this up, My favorite story of Alianna is a few years ago watching her when she was trying to get her shoes on her foot. She is not able to point her feet down, only up, so she wasn’t able to get her shoe on. But instead of being frustrated like me or most people would have been, she was laughing the whole time. That’s when I knew in my heart that my daughter has spina bifida, but spina bifida does NOT HAVE HER.