A Trisomy 18 Warrior
Jazz’s journey began with a repeat anatomy and physiology exam at 25 weeks. After switching hospital institutions midway through my pregnancy, it was determined that a few findings didn’t match what my physician had seen in my previous records. A repeated NIPT scan came back with a 33 percent probability of Trisomy 18.
We then chose to move forward with an amniocentesis and ultrasound to confirm. By that point, we were 26 weeks along and fully committed to continuing the pregnancy, no matter the results.
Jazz came into this world prematurely at 34 weeks and 4 days. Our plan was for him to receive immediate respiratory intervention so that other areas could be assessed quickly. Jazz ended up having more needs than what had been shown during his fetal echocardiogram. Multiple attempts at intubation were made before the head of Pediatric ENT was finally able to secure his airway.
The first few weeks were rough. We faced many delays, but thankfully fewer denials. At 3 weeks old, Jazz received a trach and g-tube. A week after he turned 2 months old, he underwent heart repair and received a pacemaker.
We made so many strides, but one more obstacle appeared—cancer. At just 6 months old, Jazz was diagnosed with hepatoblastoma. He endured 4 rounds of chemotherapy and today stands cancer-free for 5 years.
Jazz celebrated his 6th birthday last June. He is the heart and soul of our entire family. He has safely traveled across the country with his family by his side. Even among his peers, Jazz always marches to his own beat. He has inspired us in countless ways.
When asked how much he is loved in our family, I always come back to the motto we declared once we chose full intervention:
"Jazz’s mission in this world is known. May we walk in a light as bright as his, that we too find ours."
Available in: Footie, 2-Piece Set, Jogger Set
