Tatum’s Tales: Part 1

Princess Tatum will forever be in my heart. I will always remember her precious smile. Her family’s dedication to finding a cure for SMA (spinal muscular atrophy) was the inspiration for “Tatum’s Tales.” I was so blessed to take Tatum’s newborn and three month photos and have chosen to share my favorites from each session with Part 1 of Tatum’s Tales written by Tatum’s sweet mom, Kayla. Say a prayer for this sweet family and watch for Part 2 and how they found Hope during such a difficult time.

“Love, hope, encouragement, joy, happiness, understanding, these are all words that come to mind when I think of my little family. Love was a word that, when I met my husband, I did not toss around lightly. When I love I give me whole heart, body, and soul. I am “in it for the long haul”, as some would say. For better or worse, sickness and health, until death do us part. Gary and I vowed before our God, our family, and our friends to all of these things and more on September 15, 2012. Dates are important to me, they mark a specific moment in time that something significant happened to me or someone I love. Our love grew daily and still continues to do so.

On December 9, 2013 I left for work feeling very nauseated and just uncomfortable. My immediate thought was a stomach bug, as I work in a pediatric primary care clinic and am exposed daily to these kinds of germ. No… a stomach bug would have been too easy. God had other plans for us. I was pregnant. Little did I know my love would grow more than I ever imagined. Nerves set in, shock set in, reality set in, excitement and happiness set in, worry set in. You name it, I felt it at some point during those 39 weeks.

Overall, my pregnancy was easy. Minus the morning sickness every… single… morning. We were on the verge to getting to love a happy, bouncy, baby girl. Every ultrasound was normal. Every doctor’s appointment was routine and straight forward. On August 8, 2014 at 10:14am we finally got to hold our little girl. We named her Tatum. She was perfect. She was beautiful. We were so blessed! We felt a kind of joy that we didn’t know existed.

As someone who works in pediatrics, you know what to look for as far as milestones, growth, and development. The commonly asked questions, I felt like I already knew the answer to. Tatum was on track with pretty much everything. I may be partial, but again, she was perfect! We went for her 2 month visit with her pediatrician. He seemed pleased overall but was a bit concerned with her muscle tone. It was different than it had previously been at her 2 week physical. She was less tight with her arm and leg movements. Our initial plan was to follow up in a month and see if things had changed.

Sometimes working in healthcare, you know too much and that, in this case, was kind of a bad thing. I went through every scenario I could think of. I then did what no parent should do when they don’t exactly know anything… I googled and it scared me to death. Ironically enough I worked with her pediatrician. I went back to work on October 6, 2014 following my maternity leave and the most recent appointment with him and I was very uneasy throughout the day. I wondering what could be wrong with my baby? Could it be this? Could it be that? I sat down with him when we had a break and asked what his opinion was and what he thought was going on. He mentioned a Neurologist. We had done some labs at her visit and tested for muscle breakdown. They were out of range, which meant that muscles were breaking down and this was not a good sign, at all.

Needless to say, I left work, went home to my baby, and called the Neurologist to schedule an appointment. We met with him on October 9, 2014. He was very nice, very straight forward, and very confident of what our daughter had going on. He did a quick exam on her and told us that Tatum had SMA, or Spinal Muscular Atrophy. It is a genetic disease and most of the time both parents are carriers. He told us that the neurons that her brain was sending to her muscles to tell them to move, were being destroyed before they were reaching the muscles, by said genetic mutation. In turn this caused weakness in her muscles, or hypotonia. It starts with limbs, then later affects the ability to swallow and eventually the ability to breath.

We did genetic testing that day to officially diagnose. We would not have a result for at least 2 weeks. We knew this was bad. We thought we had heard the worse part of it, until he said that the average life span of a child with this condition was 2 years old.

The room froze, he was still speaking but all I could see were his lips moving. I didn’t hear anything beyond that last statistic. Gary and myself are generally optimistic people, the glass is half full instead of half empty. We try to find the bright side of every situation. That day, we left terrified and only thinking the absolute worse. We didn’t sleep well. I did not return to work. Our hope for a family and our sweet baby girl was crushed.

During the next few days we waited for test results. We waited for a phone call from our doctor to tell us that our child would be fine, and that what he had initially thought was the diagnosis was wrong. On October 14, 2014 I received a phone call around 3:00 in the afternoon for the Neurologist. He confirmed our fears. Our nightmares became a reality. Our daughter had SMA. There is no cure. There was no treatment. We had no idea what to do. We didn’t know who to turn to. We didn’t know anything anymore.

Life has a way of knocking the breath out of you. It can turn your world upside down in a matter of seconds. Our world was rocked. Our days were numbered. Our time with our daughter was completely unpredictable. No doctor could give us a number. We had no idea when she would take her last breath. We had no idea of anything.

Every night before I would put Tatum in her crib, I would read her a book or sing her a song and rock her. That night and every night after consisted of a song or a book, but also a prayer. A prayer for peace and understanding. A prayer for a miracle. A prayer for strength for whatever may come our way in the near future. You see, we were so caught up in our new marriage, our new house, and our new baby, that we lost sight of the one that made it all possible. God stopped us in our tracks. He gave us a precious baby but this baby was more precious than we EVER imagined. She was a gift. She was specifically placed with us for a reason.

The next few months were a whirlwind. From doctor’s appointments to therapies, we stayed very busy. I had also gotten in touch with other SMA families and gotten more insight on the course of the disease and potential clinical trials that were showing great improvements for children with this disease. One day, I received an email from a friend with some information on a clinical trial that was taking place in the US. After many phone calls, and more emails, in mid December we were set up to take Tatum to her first visit with St. Louis Children’s Hospital in hopes of receiving her first treatment. At the time there was no FDA approved treatment, so trials were our only option.

Finally! We had a tiny glimpse of HOPE! We found a group of people who wanted for our child what we wanted since the day she was diagnosed! They wanted to give her more time, more opportunity, and more importantly a better quality of life! Just when you feel like he isn’t listening, God has a way of showing up and showing off.

We went for 2 treatments with the Children’s Hospital. Tatum was due to go to her third treatment in February, but instead caught a little cold that turned into a major problem. On February 5, 2015 we landed in the ED at Vanderbilt Children’s hospital with a respiratory illness. For any other child this would be something that you would monitor at home, but for Tatum this was life threatening. Congestion, drainage, and a cough could literally take her life.

Again, Life, it’s like a roller coaster ride. Highs and lows, twists and turns. Moments that make your stomach drop. Moments that take your breath away. During our hospital stay, we talked about every moment from the beginning to the present. We laughed, we cried, and we told stories. Our support system was unbelievable. God knew that we couldn’t do this without our community of people who loved us. He knew exactly what we needed during the next 10 days and he provided so well.

As a parent, when you soak in the reality of a diagnosis like SMA, you have a major decision to make. You have to choose what you want to do in that moment. That moment when your child stops breathing. That moment when the monitor is doing all the work. That moment when a ventilator is the only thing keeping her alive. We chose. Long before that moment, we chose quality over quantity. We chose what was best for our family and what was best for our hearts, and ultimately what was best for our daughter. We told our immediate family our decision long before that moment as well to avoid any surprises and to allow them time to process. We had to make a decision that no parent should ever have to make. We chose eternal happiness. We chose peace.

After 10 very long days. Our decision we had discussed as parents became reality. On February 15, 2015 at 3:02pm our little baby girl went to be with her Heavenly Father 1 week after her 6 month birthday. She smiled as she took her last breath. We believe that was God’s way of letting us know that she was at peace, she was forever taken care of, and forever in the arms of the one who created her. Our family and close friends gathered around to witness that amazing love of Jesus as we held our sweet angel and allowed her to pass away so peacefully.

Over the course of four months, we prayed for a miracle. Tatum was our miracle the whole time. She was our gift. She was our hope. She was our joy. She is the reason we wake up each morning and live life to the absolute fullest! Her journey, although short, brought people to know Jesus and know that he is the Creator. He gives, and he takes away, but not without giving the strength that is needed to carry on. We are living witnesses that our God is amazing and that even on our worse days, he loves and he cares.

RIP Princess Tatum- Until we meet again.”

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