Happy 2nd Birthday, Elijah!
We learned our son, Elijah, was diagnosed with Trisomy 18 (T18) prenatally. Our doctor explained "what it all means," then handed several sheets of printed paperwork on T18. Every doctor said the same thing, "there's very little, if any, life expectancy for T18 babies." They even discouraged us from learning about the condition ourselves. And with no knowledge of T18, we went to Google and the search results were horrific. We felt hopeless, frustrated and angry.
Elijah was born on March 28, 2017 with full T18, a genetic condition where he has an extra chromosome in every cell of the body. We were told to enjoy our limited time with Elijah as he would probably die soon. We did not receive routine newborn care; instead, we met the bereavement team, palliative doctors and hospice staff. There are many challenges to care for Elijah, mainly because questions regarding his care have limited answers. We still experience challenges caring for Elijah now, but we are not afraid to seek answers. We're not afraid to find a physician who knows. We're not afraid to walk away from a physician who doesn't know.
Many physicians and specialists have never encountered a T18 pediatric patient before. Some have never heard of the condition. Since T18 is a rare condition, our family travels over 100 miles to get care for Elijah. We see Children’s Hospital of Alabama for cleft lip and palate, genetics, pediatrics, speech, hearing, audiology, ENT, nephrology, gastroenterology and pulmonary.
Elijah has had five surgeries and relied on both Blue Cross Blue Shield and Medicaid for his care. Prior to Medicaid, we were receiving bills dated back to his birth. There is no way we could afford to pay for all of his medical needs and expenses without Medicaid.
We advocate for Elijah because being denied therapeutic services, medical nutrition and access to quality health care is no longer acceptable. Elijah is a joyful, talkative and playful guy who enjoys music and dance parties with his siblings. He has no medical frailties that prevents him from travel or having quality interactions with others. Elijah continues to defy the medical odds of T18, that’s why we advocate for Elijah!