On August 26, 2019, my universe came to a standstill. I was 24 weeks pregnant and filled with anxiety. My routine OBGYN appointments had become increasingly busy, marked by a series of classes. Despite the joy of seeing our unborn son, Heery Wyatt, something felt amiss. As first-time parents, everything about our pregnancy was meticulously planned.
In the examination room, time seemed to stretch into eternity before my doctor entered. His face, usually composed, was etched with sadness. In a straightforward manner, he told us, ‘We can’t see any arms.’ I was stunned, repeatedly asking, ‘What do you mean?’ He couldn’t confirm it yet, but he believed our son would be born without his upper extremities. I don’t recall much about returning home. My husband and I sat in silence, clinging to each other for support.
The following day, we visited a high-risk doctor at the best hospital in our area. Armed with every ultrasound from my pregnancy, I desperately pointed out what I believed were arms, hoping for a mistake. But every image confirmed it: Henry wouldn’t have arms, just hands directly off his shoulders. As the reality sank in, I felt numb. I couldn’t breathe, struggling to accept the news. That night, I vomited in the parking lot, not from nausea but from sheer panic.
The doctors couldn’t confirm the diagnosis without the results from our amniocentesis, but they suspected our son had a rare genetic disorder called Thrombocytopenia Absent Radius Syndrome (TAR). This condition leads to low platelets, missing arm bones, other limb deformities, a compromised immune system, and often a milk protein allergy. Henry had the short arm variant of TAR, a rare occurrence among 1 in 200,000 births.
Sharing the news with our close family members, we faced their myriad questions, having few answers ourselves. My main concern wasn’t about his arms or lack thereof; it was about our ability to care for him. I felt inadequate and overwhelmed.
Our next challenge was adapting. One of my immediate concerns was finding appropriate clothes for Henry. Why did everything have sleeves? My sense of inadequacy hit me like a freight train, leading to sleepless nights and deep despair. Eventually, I realized I couldn’t stay in that dark place. I had to fight for my son, who I lovingly called my ‘lucky fins.’
Through extensive research, I discovered a supportive community in a TAR Syndrome Facebook group. These individuals provided hope and a lifeline when I felt overwhelmed by waves of despair. One particular friend, Christina, became my guiding light, teaching me how to find strength within myself and become an advocate for my son.
When the cold day in December arrived, I felt a mix of nervousness, excitement, and fear. Henry Wyatt was born at 12:54 p.m. via C-section, weighing 6.2 pounds. Although I hadn’t planned for a C-section, it turned out to be the right choice. Henry’s platelet count hovered around 13,000, significantly lower than the normal range of 150,000 to 450,000 for a healthy newborn. He spent the first month of his life in the NICU, facing various challenges.
Despite setbacks, we found immense support from the NICU nurses who became my lifeline. Determined to breastfeed, I persisted despite Henry’s severe lip and tongue tie. With the help of Nurse Rachel, we succeeded. A few months later, Henry refused to latch, leading me to exclusively pump breast milk, a journey I proudly continued for a year.
Somehow, we were chosen for this unique journey. It might never make sense to us, but it’s our reality. We had no choice but to embrace it. Henry is now 18 months old and the most perfect boy in the world to us. Every day, I marvel at his personality and light. He scoots, bounces, and rolls around the house, using his feet to push his trucks and feed himself.
Yes, there are incredibly challenging days, but there are also amazingly beautiful ones. Our mantra remains: ‘No arms? No problem!’ We cherish every moment with our son, celebrating his uniqueness and embracing the boundless love that connects us.”
This touching story was shared by Jessika Turner of Mobile, Alabama, and originally submitted to Love What Matters. You can follow their journey on TikTok and Instagram. For more information about TAR Syndrome and limb differences, please visit relevant resources.