“When I was young and had pictured my life and future, I never would have imagined I would have a child with special needs, much less two. But what I have learned over the years is God puts you on a path you’re meant to be on and with people that forever change you. The challenges we face don’t destroy us. They define us and make us who we are.
The emotions and excitement that came with knowing I was finally pregnant after months of trying are indescribable. I was ecstatic and so relieved we had finally found our way here. Throughout my pregnancy, I held my breath at each appointment, just praying everything was okay and sure enough, I would leave with the great news that everything looked great! Once we found out we were having a boy, I dreamed every possible dream for him. I dreamed about the way he would look and act, how kind and intelligent he would be, how successful he would become, and about the future family he would have of his own one day. I was thrilled to bring this precious boy into the world and to have a chance to mold him to become an incredible man. Since then, I have learned so much about life, dreams, expectations, and hope. Life is unexpected. You never know what challenges you will be faced with, but it’s all about how you face them and how you come out on the other side.
Leo was my first baby and my pregnancy was totally normal! I went into labor on my due date and Leo arrived 12 hours later at 1:18 a.m. on June 11, 2015. When he was born, everything seemed perfect — still connected to the umbilical cord, he cried and he was everything I imagined. My heart was overwhelmed with love for this little gooey blue baby!
Then a few minutes later, everything changed. My husband, Kenny, performed the customary cutting of the umbilical cord, and suddenly, Leo stopped breathing. He was immediately ripped from my arms by a team of nurses, who started bagging him with oxygen. The NICU was paged and a whole team of doctors stormed into the delivery room.
At this point, I was, of course, terrified and hysterical. I had just delivered my first baby and had no idea what was going on. All I knew was he was not breathing. When he was rushed to the NICU, I sent Kenny with him while I waited for my epidural to wear off so I could see him. Around 5 a.m., I finally got wheeled up to see him. His helpless little body was just lying there, intubated with a breathing tube, wires, and machines everywhere. I was not able to hold him. I could only simply kiss him goodnight and head to my room and attempt sleep.
Around 7 a.m., the NICU doctors came to tell me Leo had Choanal Atresia, a congenital disorder where the holes in your nose (a newborn’s only means for breathing) are not developed. Instead, Leo had a bone, and thus was unable to breathe on his own. He needed emergency surgery, but the one doctor in Louisville capable of performing this specific surgery happened to be on vacation. Leo was rushed by ambulance to Cincinnati Children’s Hospital, about 100 miles away. Thankfully my doctor is AMAZING and immediately released me so I could get to him. We followed the ambulance and prepared for his surgery the following day.
The surgery went great, but because Choanal Atresia is associated with a couple of very severe genetic disorders, we met with the genetics team. They performed every test under the sun. They checked every inch of that boy from his heart and lungs, to kidneys. He had X-rays and CTs. After a WEEK of testing, they gave him the all-clear. The doctors concluded this was a random isolated event and we were FINALLY free to take our baby home.
As a new mom, I was your typical wreck. I was trying to breastfeed, but since Leo had been in the NICU and had grown used to only using a bottle, he struggled to eat. This was exacerbated by his small airway and other structural issues. I was in the doctor’s office weekly making sure he was gaining weight. He wasn’t sleeping (do they ever?), and I was exhausted. It was hard, but we survived, and I loved the three months I spent with him on maternity leave.
The week I went back to work, Leo had a three-month follow-up with the genetics team in Cincinnati just to make sure he was doing okay. I thought this appointment was no big deal because, to me and his doctors then, he seemed like a typical newborn. His pediatrician had never said a word to me otherwise, nor had anyone else. Kenny was not with me on this trip and instead, I just drove up with Leo and had my mom join us. At that appointment, EVERYTHING forever changed for us. They told me Leo was not developing like a typical three-month-old. As a result, they decided to test him for Down Syndrome but when that came back negative, they then looked at all his chromosomes. At four months old, we received Leo’s diagnosis of a rare chromosomal abnormality, partial trisomy 18. This means Leo was missing part of his ninth chromosome and instead, had an extra piece of 18 on top of it.
In order to trace how this all happened, Kenny and I had our chromosomes tested, and it turns out I am a carrier of a balanced translocation of these chromosomes, which for me had no effect. My genes are just arranged differently, but I still have all my genes. Unfortunately, Leo inherited an abnormal one from me and is therefore unbalanced.
The day I got the call about this, I was at work and had become an emotional mess. We had to go in for further testing and now a brain MRI to see what this really meant for Leo. The interpreted results of Leo’s MRI showed his brain works a little differently with how it communicates. This meant, Leo might not ever walk or talk, he might have severe learning disabilities and/or could be dependent on us for the rest of his life. With this news, I mourned the life I had expected and envisioned for our son. I was scared about what this meant and unsure of what his life would look like. I worried about the challenges he would face, how people would treat him, and what this meant for our life, but I quickly got it together. I realized worrying does not help anything. The ‘what-ifs’ are just that: what-ifs. That means nothing. So, I did what moms do best: I set out to get all the answers and find out exactly what I needed to do to give him the absolute best chance at beating the odds. I accepted our future and found peace in knowing I was chosen to be his mother for a reason. While this was a path I never expected us to be on, this was where we were so we might as well make the best of it and prove all these doctors wrong!
Leo continued to do just that. He’s a fighter. To date, he has had over 10 surgeries. He sees countless specialists at Cincinnati Children’s Hospital; he has had more doctor appointments and hospital stays over the past 5 years than most people experience in a lifetime. He works hard at therapy weekly. We started with eight therapy sessions a week when he was four-months-old because I chose to do private therapy plus therapy provided by the state of Kentucky, an early intervention program called First Steps.
Looking back, I honestly do not know how we did it all. I was working at an office full-time and running him to all of these appointments. Kenny was also in the process of getting his MBA in Chicago and had been commuting there every week. Our life was pure chaos and literally ‘go, go, go.’ We just did what we had to do for our son, to give him the absolute best fighting chance possible. I knew early intervention and incredible doctors were critical, so we did not think twice about any of this.
It was a difficult first few years, but as the years went on Leo got stronger and started hitting more and more milestones. At one year old, he was able to sit! By two, he was crawling. At two and a half, he was cruising in his gait trainer; and then at three, he took his own independent FIRST STEPS! Now he is always chasing his younger sister around and has the cutest run you have ever seen! He also started saying his first words around three years old and the best day was when he looked at me and said, ‘I love you, Mommy.’ (I mean, melt my heart!). While his speech is still very delayed, he is talking and understanding more and more each day!
I look back at all of this and am truly humbled and amazed at what we have been through. I am so proud of him for working hard and never giving up. I am proud of Kenny and I for putting in 110% effort to make sure he was given the best chance. He continues to amaze his doctors! While his disorder is extremely rare, we are letting him pave the way and be the inspiration for others who will come after him and the inspiration to anyone going through something similar.
The best thing about Leo is his joy! He is the happiest little guy and would sit and give me 1,000 kisses on any given day. He is a constant reminder life is precious, there is always something to smile about, and a hug or kiss can truly fix anything!
Leo is five years old now and we have found ourselves back to square one because we are expecting another special needs baby. We decided to expand our family almost three years ago and knowing the risks, opted for IVF with genetic testing to be sure we had a genetically normal child. On October 27, 2017, our daughter, Frances, was born. We tried IVF again in December 2019, but it was unsuccessful. As we were navigating what this meant for our family and how we would move forward, life once again threw us a curveball and we unexpectedly found ourselves pregnant. We knew the risk and we were worried from day one, but also had Leo to remind us how much a blessing a special needs child is, and no matter what, everything would be okay. At 16 weeks I had an amniocentesis performed and sure enough, two weeks later I got the call that we are having another special needs baby. This baby is the opposite of Leo. He is missing a large piece of his 18th chromosome and has a small piece of the ninth in its place. Since it is not the same as Leo, we truly have no clue what to expect. We are being closely followed and numerous tests have been ordered to give us the best plan of action come delivery in January.
This time around, I am so much more prepared. I know what steps I need to take to fight for this boy from day one. I know what doctors and therapists that he will likely need to see. I know who is equipped to help me provide the best care for him. I know I will be given the worst-case scenario when it comes to his prognosis. I will choose to not listen to one thing they will tell me he cannot do. He will be raised in a home filled with pure love, dedication, and acceptance of him just the way he is. But we will also push him and challenge him to exceed all expectations. I am thrilled Leo and this baby boy will have a very special bond, not to mention they have one amazing sister to cheer them on every step of the way.
While my family might look different than yours, we are a family just like you. The road we walk is challenging and unknown, but so incredibly rewarding. If you find yourself in a similar situation navigating unfamiliar territory, please know you are not alone and you do not need to do this alone. Lean on your people! Do not ever let a disorder, prognosis, or terrifying unexpected news scare you from taking action. Pick up, get up, and go. What you do at that moment is what truly makes the difference for your child and their future. Have faith and know you are on the right path and you were chosen to navigate this uncharted territory! I promise you will look back and be in awe of how far you have come. Life is a beautiful but difficult journey. Embrace it and enjoy every moment. If you do this, you will be pleasantly surprised at how amazing your life will be.
I hope our story is an inspiration to you. Leo is incredible and we are so lucky to have been blessed with him and I know our new baby will be the same. While I still have no clue what the future holds for our boys, I have so much hope and big dreams for them both and this family of ours!”
This story was submitted to Love What Matters by Morgan Moyer from Louisville, Kentucky. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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