Zayden's introduction

Hello, my name is Zayden. I made a surprising early entrance into this world at just 35 weeks gestation, born in a hospital in Martinsburg, WV. My journey began with challenges—Mommy had to have an emergency c-section because I showed signs of fetal distress. When I was born, I didn’t cry and couldn’t breathe on my own. The amazing doctors and nurses immediately worked to save me, performing CPR until a ventilator arrived to help me breathe. At the same time, they started cooling my body to reduce further injury to my brain. Unfortunately, Mommy was still under anesthesia and couldn’t hold or comfort me. I was quickly stabilized and prepared for transfer to a hospital in Morgantown, WV, which had a higher-level NICU to address my specialized needs.

The doctors informed my family that I was affected by several conditions, including HIE (Hypoxic Ischemic Encephalopathy), complications from being breech, feeding difficulties, an abnormal brain MRI, GERD, undescended testes, low muscle tone (hypotonia), an abnormal EEG, and other concerns like chronic respiratory failure. They even suggested discontinuing life support and transitioning to comfort care. But my Grammie wasn’t ready to accept that outcome. She immediately stepped in, advocating for me and helping my parents understand the medical terminology and options. Grammie questioned everything the doctors said and pushed back when she disagreed.

Thanks to Grammie’s determination, she insisted on involving a genetic specialist. She felt she was reliving a familiar situation, comparing my struggles to what she had seen in my mommy years ago. The genetics team conducted a series of tests to pinpoint what was happening. After several rounds of testing, the final genetic test (geo-sequencing) revealed the answer: I have a rare genetic condition called Congenital Myotonic Dystrophy Type 1, and my mommy was also diagnosed with Classic Myotonic Dystrophy Type 1. Until this point, no one knew either of us had this genetic disorder.

I WAS BORN WITH A RARE GENETIC DISORDER CALLED CONGENITAL MYOTONIC DYSTROPHY TYPE 1, AND MY MOMMY HAS IT TOO.

Currently, I have a tracheotomy and use a ventilator with a humidifier. However, I’m making progress—I can now spend 30 minutes twice a day off the ventilator as long as I use a filter attached to my tracheotomy. Grammie is determined to help me get off the ventilator completely before I turn three. I also rely on a suction machine to clear my airway and a nebulizer for medications to keep my lungs healthy. Most of my nutrition comes through a GJ feeding tube since I was born without the ability to swallow or a gag reflex. But I’m improving! With Grammie’s and my nurses’ help, I can now drink 1/2 an ounce up to 8 times a day (it takes me about 45 minutes each time). As a treat, Grammie gives me oatmeal cereal mixed with bananas when I’m not too tired. She reminds me daily that we’re working toward the goal of eating and drinking on my own by the time I turn five.

I also take medication to strengthen my heart, which has a few challenges, including PVCs (Premature Ventricular Contractions) and an elongated QT complex. My hands and feet don’t work like most people’s yet, but I’m making improvements—I can now turn both hands inward and cross the midline of my body. I recently got fitted for braces and will receive them in early February 2025! In mid-February, I’ll be evaluated for additional equipment to help me sit up, stand, and eventually learn to walk. Different doctors are recommending tools to support my growth and mobility.

My life will come with many challenges, but with each new hurdle, my family and I are ready to tackle it together. As I grow, more medical issues have been identified, but we’re addressing each one as it arises. I see many specialists every week, and I work hard alongside my mommy, Grammie, GG (Great-Grandmother), Grandpa, and my amazing care team. As of this post, I’m almost 8 months old and getting stronger every day thanks to everyone’s love and support. I now live in Southern Florida and receive most of my care at Johns Hopkins All Children’s Hospital. This is just the beginning of my story, and I’m determined to keep thriving!