“He began to turn around, we can finally see the light through the trees!!”
Markie Bracamontes, Trisomy 13 Mosaic, 04/13/2015, Los Angeles, CA
I knew almost instantly when I became pregnant with Markie. He was 14 years in the making. Confirmed at my dr’s appointment I was also told I had gestational diabetes. I took very good care of myself. All my appts went very well. NIPT testing was done. It was confirmed that I was having a boy and no chromosome abnormalities were detected. Ultrasounds were normal etc. the day I gave birth was a day I’ll never forget. He was blue and not breathing. Immediately taken to NICU for support. Respiratory distress and hypoglycemia and a slightly globular heart were his diagnosis but he should be fine. 3 weeks in NICU and we took him home. 24 hours later he stopped breathing. We took him to ER and told he had pneumonia! A week in PICU a nurse mentioned to have his heart checked. It revealed a large PDA and tiny ASD. Along with pulmonary hypertension. Corrective surgery was done for his PDA and he was intubated at 4 weeks old. Remained heavily sedated and paralyzed due to numerous infections and collapsed lungs. At 3 months dr’s decided to trach. He began to turn around, we can finally see the light through the trees!! However, it wouldn’t be Markie if he didn’t do something new, seizures! At this point a resident dr decided to have genetics testing. Thats when we were told about his mosaic trisomy 13. Mind you the Genetics dr had not tested him before because he felt he didn’t have a “syndrome”..He’s off most meds, working with PT/OT and is thriving. Our issue has now become feeding.. Never an issue before until now. But I have faith, our dr’s have faith and Markie is determined. He is my Hero!