Tiffany's Story

Meet Tiffany a fantastic mum to 3 beautiful children, this account is truly honest and inspiring and I can resonate with some of these feelings. It honestly brought a tear to my eye!

Tell me abit about you?

My name is Tiffany, I'm the mother of three beautiful little red heads. Keegan is 7 - he's my brilliant mind, always building legos or reading a book. Addy is 5 - she's my adventurous spirit, usually found twirling in some kind of a dress, and angling to get into mama's make up. Ollie is 17 months old and currently obsessed with his newfound freedom of walking, all things outdoors, and his big brother and sister. 

What is your limb difference?

My daughter Addy was born with Symbrachydactyly on her right side. It caused her forearm to be shortened and she does not have a wrist or hand on that side. She has little tiny "nubbins" that would have been fingers that she can wiggle. We call it her "lucky fin" as this makes it easy to explain to curious children. 

When did your parents find out?

Addy's limb difference was missed on ultrasound when I was pregnant, it was never detected. To say we were shocked when she was born would be the understatement of the century. My husband was serving in Afghanistan at the time, making an already emotional situation even harder. I was scheduled for a repeat C-section, and thought I knew what to expect. The minute she was born they lifted her up and I looked right at her face. "She's here!", I said so my husband who was on FaceTime could hear as I knew there was a bit of a delay. My father, who was with me in the operating room immediately began asking questions about her. I can remember him saying "Is she okay?" The nurses who were cleaning her up kept saying she was okay, I could hear her crying and just assumed he was checking on her...but he kept asking. Over and over he asked if she was okay. The doctor who delivered her even said she was okay. It was then that I looked over at one of the surgical nurses who had walked over to look at Addy, and saw her look at the doctor and shake her head. The anesthesiologist who was sitting next to my head got up and walked over to the isolet that Addy was in, then walked over and lowered himself to be close to me. "Her heart sound good, she's breathing well...but she is missing her right hand. It's not there"

I don't remember much after that point. Later I found out that I tried to get up off of the operating table, and that my father had to forcibly hold me down. I went into shock. My next memory is her being placed in my arms in the recovery room and asking my dad if my husband knew. The next four days were excruciating, a stream pediatricians who had never seen symbrachydactyly before, a geneticist who gave us a list of possible diagnoses and surgeries she would need before even running a test to rule those out, and the realization that we needed to make our friends and family aware. In the age of social media, people were wondering why we  hadn't shared pictures or posted about Addy's arrival, adding another level of anxiety and stress to an already unimaginably difficult situation. 

I was lucky enough to have family circle around me, and let me know that they were going to love and support Addy no matter what. I was also blessed with an incredible nurse who stayed with me through the night, talking to me, soothing me, listening to me cry and worry. She literally picked me up when I was too weak to stand on my own. I'll never be able to thank her enough for everything she did for me those four days.

What help and support have you been offered?

The first support we were offered was actually from my brother in law. When Addy arrived, I asked that my mom tell my sister and her husband. He took it upon himself to do some research online, and found several resources for my family, including the amazing Lucky Fin Project. He sent all the resources in an email to my mom which she forwarded to me when she felt like I was ready. It was an incredible act of love on his part, and wonderful foresight as getting online and doing research was the furthest thing from my mind in those first few weeks.

From there, we sought out a medical diagnosis as no one at the hospital was able to give us one. I had a list of questions that I needed answers to, and no one was able to help me. We went to Cincinnati Children's Hospital and saw Dr. Little in October once my husband had returned home from Afghanistan and finally met his daughter for the first time. I had spent several days bracing myself for the visit, with my list in hand, determined to get as much information as possible. This was the first time we were in a room with a real specialist who would be able to give us the information we were desperate for. "It's symbrachydactyly, specially trans - forearm. It's not surgical, we will just want to monitor her as she grows and develops muscle." It as just. that. simple. He spent the time to answer all of the questions on my list, but at the end of the day, we had our answer: she was fine, she was going to be okay, nothing was going to change. And we've operating under those statements since. 

What are the positives about your limb difference?

Addy's limb difference has opened our eyes to an entire community of people we didn't even know existed until she was born. Through the Lucky Fin Project, we've met friends that have become family, and through the magical world of social media, been able to watch their kiddos grow and flourish right along with Addy. It's been wonderful to see kids older than Addy excelling in sports, following their dreams, and figuring things out that I sat and worried about in her first years. Addy's limb difference has also taught us about acceptance of differences, the need to celebrate them, and how we can help to educate those around us about the limb difference community! We've also seen our son take on a protective role with Addy, and watched him step in to explain her limb difference when she was younger and unable to do so on her own. It was almost a relief when he was able to step in so that I didn't have to explain it to people over and over, and get thrown back to that day, and all those feelings of anxiety and worry. Now that Addy is five and able to explain it herself, it's been fun to see them both take on the educator role and spread limb difference awareness on the playground, in school, and anywhere we are! We even welcomed another lucky fin into our family this year...his name is Popcorn! He's a golden retriever puppy who was born in Canada missing his front right paw, just like Addy! He's been a wonderful addition to the family, and the bond him and Addy share is incredible!

What negatives have you encountered? 

We have definitely had some uncomfortable situations and encounters with people, but as time has gone on and I've come to terms with our limb difference journey, it's been easier to take those uncomfortable situations and turn them into teaching moments. We are all about asking questions if they are from a place of genuine curiosity or empathy. What is harder to deal with and often times triggers my inner mama bear to come out, are the blatant stares, the pointing and whispering, and the occasional rude or mean spirited comment...nobody has time for that! :) 

Have you needed to have any procedures?

Addy's limb difference is not surgical, so the only intervention she's had is physical therapy and occupational therapy from the time she was about 6 months to 18 months old. She was struggling with balance and fine motor skills, and was falling behind on reaching her milestones. PT and OT helped her to catch up and learn to use her lucky fin for balancing, and holding things in her own special way! She's been able to figure out most things on her own, we haven't had to come up with any crazy inventions for everyday use like we originally thought we would. It's been amazing to watch her learn how to navigate her world in her own unique way. 

What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?

IT GETS EASIER. The first three years of Addy's life were the hardest. I struggled with anxiety and depression, and was eventually diagnosed with PTSD after everything I went through the day she was born. Every year around her birthday, I was thrown back to the day she arrived and went through all those same emotions. It was exhausting. A dear friend, also a member of the limb different community because of her son, once told me that the first three years are the worst. From there, it get's easier. She was spot on - I don't think I truly celebrated Addy's birthday until she turned four, not in the traditional sense. Yes, I went through the motions...cake, presents, family get together, the whole thing. But on the inside, I was a wreck. Reliving her arrival over and over on a constant loop, being swallowed and consumed in memories. It took several prescriptions of anxiety medications, therapy sessions, the Lucky Fin Project and it's community, and the love and support of an amazing man who stood by me at my lowest points to get me to where I am today. She's truly amazing, I've always known that, but it's taken me a while to accept and embrace our limb difference journey. There's an entire community waiting to love and support new families as they face a diagnosis or birth of a limb different child. Welcome to the club! 

What advice would you give a kid with a limb difference?

BE YOU. Be unforgivingly you. Because you are beYOUtiful.