“Defying All Odds: An Inspirational Mother’s Tale of Parenting a Child with TAR”


“On April 26, 2019, my world came to an end.” I was worn out and 24 weeks pregnant.

My OBGYN appointments were beginning to go awry. We were required to return for another ultrasound this week for the third consecutive week. Even though I was happy to see our little Henry Wyatt again, I could not shake the feeling that something was wrong. This was our first time, and he was utterly enthralled.

Thanks to Jessika Trayer

Before my doctor arrived, we were seated in the examination room, and it felt like an eternity. Every time I see his face, it appears very sad. Honestly, he is a really direct and honest man. “We can not see ay arms,” he said to υs. I looked at him as though he had just barely begun to speak another language. “What do you mean?” I inquired again and again. Though he could not confirm it at this time, he did believe that one of his lower extremities would not have been there at birth. I do not remember much about leaving for home. I vividly remember spending the most of the evening sitting down and not really talking with my husband. We simply held hands.

Coυrtesy of Jessika Tυrпer

The very next day, we were brought to the high-risk physician at the closest hospital in the region, the Eastern Star. I personally felt every single discrete ultrasound throughout my whole pregnancy and forced the doctor to take pictures of what I thought were arms. I was chasing shadows and holding out hope that something had gone wrong. I continued to make attempts to obtain help from the ultrasound because I was unable to handle the information we were seeing. I continued searching my hand for answers, but he was just as baffled as I was.

I vividly recall trying to hold my breath while sitting in the doctor’s office, thinking that this would provide them with a sharper image of the high-resolution ultrasound. Every picture supported the idea that Henry would not have arms. Straight from his shears, J\st has. I remember feeling more like myself than I have ever felt as I walk out of the high-risk doctor’s office. I was unable to breathe. I could hardly walk without clutching my handkerchief. I tossed it into the parking lot, a handful from each paÿic.

As we walked away to clear our brains, my husband and I both sobbed. We drove down to the neighborhood pool and sat in the car beside the water. I can still clearly recall searching on Google, “What covers your arms?” and finding something that fits. It was really interesting since I wanted to learn more.

Coυrtesy of Jessika Tυrпer

Without knowing the results of the autopsies, the physicians could not confirm it yet, but they believed He¿ry suffered from an uncommon genetic condition known as TAR, or thrombocytope¿ia auxet radiation syndrome. It causes low blood platelets, maligoplasty, other limb malformations, a weakened immune system, and, more often than not, an allergy to milk proteins. TAR syndromes come in two varieties: “long arm” and “short arm.” Patients with limb amputation TAR are missing only the radial artery in the arm. All three arm ossicles are missing in short arm TAR patients. Out of 200,000, this was the only one with a short arm TAR.

We spoke with our immediate family members and shared the limited information we had at the time. They had a ton of questions, and I had none to answer. The question I found myself asking over and over was, “How in the world are we supposed to raise a baby with no arms?” I felt guilty for feeling the way I did when I initially looked back those few days after we received his diagnosis. “How am I going to be a mom to a young kid who needs more than I can give him?” I asked myself again and again. It dawns on me now that I was not concerned about his arms—or lack thereof. I was concerned about my ability to care for this amazing dog since I did not feel like I was adequate.

The next action was to learn how to adjust. One of my favorite things about Henry when we were walking out of his arms was his clothing. Why are there sleeves on everything? The sleeveless pieces were all summer clothing, and the dress was devoid of sleeves. Feeling inadequate struck me like a freight train. I did not get any sleep. I skipped meals. I cried, I screamed, and I behaved like a crazy person. My soul broke in half, I felt. My fellow individuals with unique needs will understand how it feels. It is ghetto-wild. I then understood that I could not stay in that gloomy place. I had to struggle. I had to figure out what was best for this small child with limp fingers.

Coυrtesy of Jessika Tυrпer

After hours and hours of investigation, I found an amazing support system on a TARS Facebook community. These folks give him hope. When the waves kept pushing me so far below, it felt almost simpler to let go of the life raft they had given me. Since her birth, I have been devoted to these friendships. Specifically, my mother has supported me through many storms. Christi¿a has taught me the art of finding my inner strength and connecting it to my heart. She has asked me to serve as an advocate for this explosive party.

I was prepared when that chilly December day finally arrived. I was incredibly happy, nervous, and excited, but I was also eager to meet this tiny human who had completely changed my life. Henry Wyatt was born on December 12, 1892, at 12:54 p.m. He was 6.2 pounds. I did not even know what a C-section was. The physicians advised trying a different birth because we had no idea what his platelets might look like. Although it felt like another option had been taken away from me, I reluctantly consented.

Coυrtesy of Jessika Tυrпer

I am still incredibly grateful that I did. Henry’s platelets hovered around 13,000 in this instance. In order to put this into perspective, a healthy platelet count typically ranges from 150,000 to 450,000. The barbecue needs begin when the number of familes reaches 10,000. His first month of life was spent in the NICU. Our release occurred on Christmas Day!

Coυrtesy of Jessika Tυrпer

Coυrtesy of Jessika Tυrпer

Ultimately, we were checked in for a heighted white blood cell camp two days later and stayed for an additional week. We underwent several tests, examinations, IVs, x-rays, and transfusions. In addition, we had many close, loving, and supportive friendships. Those incredible NICU nurses became my lifelong friends. Despite Hery’s tight lip and tongue tie, I decided to breastfeed. Rachel, one of my participants, helped me every single day until we were able to resolve the issue. I shall always remember her childishness. Unfortunately, he would start to latch a few months later, so I had to convert to only pumping, which I did proudly for a year!

Coυrtesy of Jessika Tυrпer

Coυrtesy of Jessika Tυrпer

We were selected for this for some strange reason. Though it may not seem real to some, it is what it is. We were forced to accept it! At just eighteen months old, Hery is the most ideal boy in the world. I was in amazement the first time I saw him with my own eyes. That is what we made! He was the forwarder.

Coυrtesy of Jessika Tυrпer

Coυrtesy of Jessika Tυrпer

I find myself staring at him while he sleeps these days. I am eager to witness the person he develops into. He exudes such light and personality. He enjoys rolling, scooting, and eagle-hopping throughout the house. His trucks are his favorite toys. Using his feet, he will sweep them around the entire floor. He provides for himself. He grips his slender cup. He is had five surgeries, too many unneeded doctor appointments, and too many hospital stays. Indeed, there will be extremely difficult days, but there will also be incredibly amazing ones. “No arms?” is the mantra we use constantly. Not a problem.

Coυrtesy of Jessika Tυrпer

Coυrtesy of Jessika Tυrпer

Coυrtesy of Brittaпy Latham-Johпsoп Stυdios

This narrative was submitted by Jessika TŅrпer of Mōile, Alāama to Loʋe What Matters. You may follow them on Instagram and Tiktok. Find out more information on limitations and TARS here. Send us your story here, and do not forget to subscribe to our free email newsletter for the best stories and videos, YoυTῡe.

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