(posted February 10, 2021)

Hello, my name is Sara and I am going to be telling you about my daughter Myla.

Myla is a little over two years old now, she was born full term. My whole pregnancy everything was said to be absolutely perfect in every scan and ultrasound that we had received. As a first time mother, I was very nervous and excited to be bringing a wonderful child into the world. After a complicated labor, Myla was born via C-section; and as crazy as it sounds… from her very first cry I could sense something was wrong. Once I was in recovery, the pediatrician informed me that she had a heart murmur but everything else seemed to be fine. Within the next few days, other things happened and we were advised we should transfer her to the NICU at our nearest Children’s Hospital. It was there in the NICU, we received Myla’s 22q11.2 Deletion diagnosis, as well as her Tetralogy of Fallot diagnosis and a few more. After that I was informed how lucky we were that she was a “pink tet”; which meant she would be able to wait until she was a few months older before needing her first open heart surgery, this was amazing news! My husband; Myla’s wonderful father, offered to work overtime when needed to let me stay home with our daughter and provide her the best care possible without having to worry about her being under someone else’s care with all of her medical concerns.

Myla received her first heart surgery at the age of 5 and a half months old. With a lot of praying and hoping, she made it through great and was out of the hospital in 7 days! We were so relieved, after many months of being on multiple medications and specialty appointments… we might finally have a break from some of it for at least a little while. We’ve followed with every specialist I can think of in Children’s Hospital and at home! This includes cardiology, immunology, endocrinology, cleft craniofacial, plastics, ophthalmology, audiology, occupational therapy, and speech therapy. Myla was doing great, she was off of all her previous medications and we got to celebrate her one-year heart anniversary! We were so happy; I did a photoshoot for her with her “Beads of Courage!”. But just a short two days later, Myla had her first seizure where she had to be resuscitated and life-flighted to Children’s Hospital. After one more seizure and a three-day stay on the neurology floor of the hospital; she was diagnosed with Epilepsy and put on seizure medication. Ever since her seizures she has received early intervention services more frequently, we now follow with both occupational therapy and speech therapy once a week each. This March will be one-year seizure-free for Myla on her seizure medication. What a blessing!

Although Myla has been through many challenges she is fun-loving, caring, and kind. We have fun every day doing educational activities at home since she is not yet in school. Before COVID-19, we also took many swim classes together, enjoyed going on trips to petting zoos, the aviary, and many more places. Other than that, Myla loves horseback riding with her Aunt Halie, visiting our family/friends, playing outside, spending time with her Grandma, and playing at home with her two dogs, Zoey (Labrador), and Asher (Great Dane). Myla fills everyone’s hearts with love when she meets them and fills our home with love on a daily basis. We try to make every day a great day for her and she does the same for everyone around her. However, we know that is not always possible, and that’s okay too. Even if it is a bad day, there is always something to be thankful for.

If Myla learns anything from me, I want it to be that you can do anything you want to if you try hard enough, and always remember you are loved exactly the way you are, so be who you want to be; not something someone else expects you to be. We hope that everyone else with 22q remembers that on even the worst of days there is something to be thankful for and that you truly are perfect just the way you are. Don’t change who you are for anyone. You are loved, I am loved, we are all loved; exactly the way we are.