‘You should put her up for adoption.’ They thought my ‘deformities’ would ‘severely handicap’ me.’: Woman born with amniotic band syndrome is ‘not limited in ANY way’

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“‘Congratulations, Mom, let’s check for all ten fingers and toes… oh wait… nope.’ On March 8, 1991, 12:52 p.m., without an indication of complications, I was born at only 4 pounds 11 ounces. Within seconds of being born, every monitor went off and I was taken away to be cared for more closely after my little body gave up on living for a moment. My mom had no idea what had happened. She only knew I needed to be saved, and I apparently didn’t have all ten fingers or toes. She was left in the dark for over 5 hours, having not even held me yet.

Doctors got me stabilized pretty quickly, but they were worried seeing my hands and feet and the band around my left leg would send my mom into shock. So naturally, they let everyone else hold me first (away from my mom). My aunt and nana were the first (my mom’s sister and their mom). My mom’s dad and his wife, her brothers, and my grandma’s sisters were all there, as well as my biological father and his family, too. It was quite the welcoming party. Time for a little disclaimer/tangent/medical side note… 30 years ago, there was no formal diagnosis given to us. It was only after years of seeing specialists we were able to say I was born with amniotic band syndrome.

I was just a little nugget, born so small preemie clothes and diapers didn’t even fit, but also, with my fingers fused together on my right hand: my thumb, index, and middle finger. They were bound and quite stunted during development from the bands. On my left hand, the tip of my ring finger is gone and has a little pointed nail. All of my toes were impacted on both feet, looking shorter or shaped differently altogether. One permanently missing a nail. My left ankle had a really deep band. So my left foot (AKA Little Lefty) was smaller, and stuck in a tiptoed position, unable to be flatted. It was also a darker color, and colder. My feet curved inward and one leg was visibly a little shorter than the other.

With this being said, back to the day of my birth… my mom at this point was dying to meet me and pleading with doctors. She kept reminding them she was training to be a nurse and she could handle any news they had to share with her. She just wanted to see me and hold me. Nothing else mattered. During this time, they wrapped me up tightly and let my other family members hold me, and they were never given an explanation. Their main focus was letting my mom rest before meeting me. My dad saw me, and he left the hospital without telling anyone. Finally, my mom was allowed to hold me. She was so exhausted, but she just looked at me and cried, ‘My little girl,’ and kissed my forehead and held me close. She noticed my dad had left but wasn’t concerned in the slightest. She knew we were going to be perfectly fine, just the two of us if need be. She was surrounded by the love of her family, she had me, she was good.

Later that evening, however, my dad came back… his family was still at the hospital, and after seeing me, they joined him to present the idea of putting me up for adoption. Saying how because I had ‘deformities’ and because I was ‘going to be severely handicapped,’ they were not equipped to raise me and I should be sent to live with someone who is a better fit. My uncle overheard my mom saying, ‘NO’ over and over again and walked in and told them, ‘With or without you guys, our family will help raise her. Mary needs time to rest now. I think you should go.’ My dad’s mother rolled her eyes and they walked out. I was born on a Friday, and went home with my mom, aunt and grandma on Sunday. (What can I say, I love that I was raised by a trio of strong women.)

During this stay, doctors and nurses told my mom how I’d need to go to the children’s hospital for my hands to get my fingers separated around a year old. Then, they said the ‘cord’ on my ankle would need to be monitored. I might never be able to walk or run. The quote of the day from them was, ‘We just don’t know what to do with it,’ regarding my leg. There was also a brief note about not being sure how much normal brain function I’d have. Yay. Clearly, all wrong. They just didn’t know. Fast forward quite a bit, I’ve had my hand surgery, I am thriving. My fingers are shorter and shaped differently on my right hand, but it was pretty clear early on this was going to be my dominant hand regardless. And ta-da! I suddenly could do EVERYTHING.

My mom invited my dad to try to be in my life on and off, and his mom to a certain degree as well. But there’s stories of how my hands would get covered by them being ashamed of me in Target or other stores. She let them know I would never be raised to be ashamed of my limb differences. I was beautiful and it was a miracle for me to even be alive. Needless to say, they didn’t really ask to see me after. When they did, I could tell there wasn’t a huge interest in getting to know me. It was more familial obligation. So, I learned rather quickly in life if someone isn’t as equally motivated to stay in your life as you are to stay in theirs, it is not worth the heartbreak, energy, or time lost. At a certain point, you need to move on. Your happiness and self-love are worth so much more.

When others noticed, my mom always stopped to answer their questions. She never hid me. I learned to walk pretty early as well, but on the sides of my ankles cause my legs were curved in. I ended up getting braces to help strengthen and straighten my legs really young. I still have them all to this day, they’re so little! Keep in mind, my leg was still stuck in a tiptoe position at this point, and my left leg was now measuring even shorter next to my right leg as I grew. My stepdad came into the picture around this time, and he never once had an issue with anything. He actually encouraged my mom to bring me on all of their dates. I was calling him daddy soon after. We played Barbies and Hot Wheels, he let me do his hair, and even let me crack an egg on his head–any random idea I ever had, he and my mom supported it.

We took nature walks together and made mini habitats for turtles/frogs and went fishing all the time. They later gave me a little brother, Karter, who is now an MMA fighter and luxury deck builder. He’s been my number one supporter, right behind my parents, and has always answered peoples’ questions when they’ve asked about me, too. He’s seriously the best sibling and most motivational person I know. He never gives up, so even if there is a tough day, he inspires me. As more friends started noticing and asking their parents about me, we decided to start telling them my story immediately, and it worked out really well for everyone. It took the mystery out of it. Turns out, the kids were just curious and wanted to learn, and it was mainly the parents who were initially uncomfortable with trying to teach their kids about it.

The minute I was old enough, my mom helped me discover my biggest loves in life–ART and TENNIS. Using my right hand, I’d create such cool drawings/paintings/construction paper pieces. I won blue ribbons at the county and state fairs and even had my work displayed in our state capitol. Art has always been my way of processing my feelings. And tennis was how I got all my frustration out and fine-tuned my movement/balance. It taught me how to handle a lot of difficult emotions in a really healthy way. I loved the idea of being on a team, working together toward big goals. I felt so welcomed from day one. I began playing at only 4 years old in our community tennis program.

By the time kindergarten rolled around, I was ready to share my story confidently. I had already met so many people in life, and with the support of my family, I totally believed in myself. From kindergarten through eighth grade, I started the first day of every homeroom introducing myself, telling my story, and sharing what I loved to do–and I was always very clear I could do anything anyone else could do. This is how I met some of my very best friends on the first day of kindergarten. We are still super close, and they can all recall their first impressions of my hands, and they’ve stood by me ever since. I didn’t experience any real bullying because of this proactive approach. I only had a kid once call me ‘Mrs. No-Fingers’…so creative, I know.

I’ve truly only had issues with adults telling me what they felt I could and couldn’t do. I was a talented artist, yet I still had a teacher repeatedly take the pencil out of my hand and tell me I should be left-handed because it looked more normal. Some would say I couldn’t run the mile or do certain activities, so we had to constantly reassure adults I was capable. Again, children never judge others naturally–they only learn to do so from watching their parents and how they react to those who are different from them. It was a little later during my elementary years my uncle (the same one who stood up for my mom and me on the day I was born) got us in touch with Shriners Hospital for Children here in Minnesota. We wrote a letter sharing my story and got accepted into their program… which meant my family would not acquire any more medical debt for my legs.

My goodness, this was life-changing. I think I was 8… so definitely not a stranger to braces or appointments and doctors, but to finally hear the phrase ‘amniotic band syndrome’–to know what this is actually called and to feel surrounded by a team who knows what it is and what we can do next, and to not have to worry about the financial side of everything for the very first time in my life… it was very emotional for all of us. We finally had answers, a plan, and I met kids like me.

In middle and high school, I had my Shriners leg surgeries. They needed to slow the growth of my right leg so Little Lefty could catch up. Then, what my left leg required was a bit more extensive. I never had my band released–they said it would cause more damage than good. So, no thank you. Whereas the ankle itself was stuck in the tiptoe position, so they decided to cut and stretch my tendon and guide my foot so I could finally walk flat-footed around 16 years old.

Shriners gave me some of my best memories–popping wheelies in my wheelchair down the halls after surgery, sneaking into my friends’ rooms after hours to play Pokémon video games (kids healing from surgeries at the same time as me). I loved every doctor and nurse I ever encountered there. Also, they gave me my full range of mobility. From this moment on, I viewed myself as unstoppable. This is a gift I will never be able to repay. These operations didn’t keep me from dominating on the tennis court. I played all through high school. Often trying to heal just to get back in time for tryouts each year, I’d barely be cleared to play, but I always made it happen. I went on to be varsity, all-conference, and MVP (I was number two singles and number one doubles). I also played all through college for St. Scholastica and UW-River Falls (marketing communications–to support my entrepreneurial dreams).

I went on to launch a photography business at 16 and was full-time by 18. 12 years later, I have literally traveled the world documenting weddings, music tours, MMA events, and so much more. I have worked with extremely high-profile figures, developed lifelong relationships with our incredible wedding clients, met the love of my life and got married, rescued a whole pack of shelter dogs, and have built the life I always dreamed of. P.S–my husband didn’t even notice my hands until 3 months into dating and when he did, he just wanted to know my story. He’s since taken up the role of also helping me spread limb difference awareness.

While I have continued to overcome various moments of people doubting me/trying to slow the momentum of my success in my adult life due to ABS, I still feel ABS has NEVER limited me in any way. Period. I have photographed/directed over 500+ weddings, I have been the only female in the photo pit of metal shows/music festivals and MMA press areas. I have been published, received awards, and ultimately, I have grown to the point of being able to proudly walk into a room without my hands shoved in my pockets, and walk barefoot down the beach without worrying what anyone has to say about it. I used to worry about things that seemed so big at the time, but time and dedication to living this life as fully as I can after already dying once showed me what is really important.

The only one with the power to hold me back is myself. Nobody’s doubts, fears, or attempts to sabotage can even touch me anymore. It was through the love and unyielding support of those around me, and also learning to walk (sprint) away from those who don’t believe in me, I was able to realize ABS wasn’t something that just ‘happened to me.’ It was actually ‘made for me.’ Without these exact experiences, I truly believe I never would have grown to love myself, found this level of success, or achieved this feeling of fulfillment so quickly in life. I had to consciously work at believing in myself, so it became second nature. So, all of these ‘obstacles’ weren’t really ‘obstacles,’ they were actually LESSONS all along.

They taught me about life, people, and ultimately myself and the positive impact I want to have on this world and those around me. I know my own heart so well, there’s no confusion when it comes to how I feel, what I believe, and what I stand for. I know where I’ve been and what I’ve experienced, and I wouldn’t change a single moment of it. I love my hands, my feet, and my ankle banding. And I love that I can confidently say so at this season of life. Of course, there were really difficult moments of, ‘Why me?’ but now, I look at all of the possibilities life has to offer and I can instead ask myself, ‘Why not me?’ ABS has never defined me, but it is, undoubtedly, one of the most beautiful pieces of me.â€

This story was submitted to Love What Matters by Kasey Jean Rajotte (Noll) of Rosemount, Minnesota.

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