Asher

2021 EMBRACING BRAVE North Texas Spring Recipient

Asher Reid was born on January 7th. During pregnancy a chromosome abnormality was suspected, but due to the rarity of the condition we learned that most facilities will not offer life saving intervention at birth. We chose not to test for confirmation until after he was born. Asher was born via emergency C-section. Within a few days Asher was diagnosed with Trisomy 18, a rare genetic condition that means he has a 3rd chromosome 18 in every cell. This condition can manifest in several abnormalities for children and is known in the medical community as “Incompatible with life”. Many hospitals and doctors will not treat children with this condition because they are not known to survive. Only 10% of children who live through birth will survive to their first birthday. 

Asher was born with a unique heart anatomy. Some parts are not where they would typically be found, and he has some pieces that have a different functional appearance than most typical hearts. He was also born with several holes in his heart called VSD, and ASD’s. The facility he was born at, would not treat him and he was discharged on hospice with Oxygen and a nasal feeding tube. We were able to find Grace and Compassion at Cook Children’s in Fort Worth Texas, where Asher was admitted at 3 weeks old. At about 6 weeks old, Asher had partial corrective heart surgery. The team was able to fix two of the large holes he had in his heart that were causing the most damage to his lungs. After a long recovery, Asher was sent home with a feeding tube in his stomach and oxygen. After being home for only a week or so, we noticed something was not quite right. Fearing the worst, we rushed Asher back to the hospital where he was diagnosed with a Congenital Diaphragmatic Hernia. CDH is often a dangerous diagnosis alone but paired with Asher’s Trisomy diagnosis it could easily be deadly. A Diaphragmatic Hernia allows the internal organs to push up through the diaphragm and into the chest cavity. Asher’s kidney and colon where applying pressure to his left lung and heart. Since those organs had traveled upward there was also an opportunity for the remaining organs to “free float” or relocate based on space. Asher was rushed to emergency surgery. They were able to close his hernia and pull his kidney and intestinal tract back down. However, organs are not stitched in place.  He had to have his appendix removed and his intestines no longer sit like a typical person. The large intestine typically wraps around the small intestine. For Asher, the large intestine sits next to the small intestine. This creates several issues with digestion and constipation. 

We are blessed to have found an amazing medical team. One that treats Asher as a person and not a condition or statistic. His pediatrician, the Cook’s medical team, his nurses, and our family (Mom, Dad, and 4 siblings) work cohesively together to give Asher the best quality of life. There were very low expectations for Asher’s life and its expectancy. Today Asher is just over 2 years old. He is happy and engaging. He does eat through a g-button but is working on oral eating. He wears a hearing aid to assist with hearing because his ear canals are tiny. He does still require some help from oxygen on occasion, but he is doing remarkably well. He sleeps on a ventilator so that he does not have issues with breathing while sleeping. He is learning to crawl and stand with the hopes of walking sometime in the next couple of years. He laughs and plays with his siblings. He loves Winnie the Pooh, and Frozen 2. He works with Speech Therapy, Physical Therapy, and Occupational Therapy. He see’s doctors in almost every specialty and we continue to learn that T18 will be a revolving door of diagnosis. His newest diagnosis being neurological and requiring more tests and monitoring. Despite all this, Asher continues to help “Change the Narrative” and defy the odds to show the world that T18 kiddos are amazing and deserve every opportunity at life. 

Just for J will afford us the opportunity to get Asher some of the equipment needed at home to help make life a little easier. Asher needs assistance for bathing that requires special seating. We are also hoping to make his room a little more functional for him and his therapy devices. 

Asher is paving quite the journey. Follow Asher’s Army