Living with Trisomy18


Our son Christopher is a 14-year-old cute boy, who was diagnosed with Trisomy 18, at the 25th week of pregnancy. At birth, he was full term, weight 4lbs 11oz and 14 inches long. He was only expected to live for two months since he was critically ill at birth. Doctors predicted his life would be short-lived because of the multiple congenital defects he had and the treatment interventions he had to receive right after delivery. The day he was delivered, he did not have healthy lungs to enable comfortable and easy breathing. This caused him to turn blue and his doctors implemented medical interventions at the right time to save his life. Right from that moment and as days and weeks rolled on, his treatments and care got reviewed by his health care team to examine him for more health complications he might have had. This led to more discoveries of multiple congenital defects that could not be detected before birth through ultra-sound that were performed during pregnancy. One of the most notable ones was his tiny heart that did not function properly, discovered by the doctors about two months. This got him a new diagnosis of a heart murmur which presented an uncontrollable pattern of breathing that was hard to sustain him under those miserable conditions. This went on for two weeks when he could hardly keep his feedings that led to frequent vomiting and marooned with respiratory pneumonia.

He was constantly getting multiple hospital admissions in the NICU which apparently became clear that he had multiple medical issues besides just his heart issue. Every month we spent endless days and nights by his bedside not having any clear way of knowing how it would end. Through various occasions, we would be called to the conference room at Washington University Children’s hospital by doctors and members of the health care team, charged with his care, to come forward or meet with them to make important but difficult life decisions regarding Christopher’s life, which would provide doctors a clear path on how to proceed with his treatments and care while in the ICU. Those were the most difficult and painful moments we as a family went through whenever Christopher became sick and admitted. As the turn of events left a heavy toll on our lives, while Christopher fought for his life on the ventilator, it became clear that he had to either get a VSD repair or alternatively be sent home to die.

Christopher has fought many health milestones during his entire life coupled with multiple and endless surgeries. To cut the story short even though I have many things to tell about Christopher, I have to summarize that he has managed to survive because of our family’s dedication to keep him happy and alive, with lots of love for him, while coordinating with his doctors and specialists to provide needed and better care with God’s love, this is why Christopher has beaten the odds in life and still lives today. As a loving family, we love Christopher very much in spite of his condition. We were given the option two options how to proceed while he was still in the womb, but we chose to go full term. Each day we have him, we count it as a bonus right from day one when we got him. We are very lucky and thankful to have him because we have learned a lot about how precious and rewarding to have him.

Would you like to make a donation in memory of this child?