Theo’s Trisomy Journey

Theo was born on January 25th, 2022 with a rare genetic condition called Trisomy 13.  He requires a trained caregiver with him at all times, whether it be nursing staff or his parents.  He is a joy and a blessing but being medically fragile has its challenges. In his short life, Theo has battled through many obstacles.  

At two weeks old, Theo suffered a life-threatening blood and urinary tract infection, which caused a stroke and lead to seizures.  Approximately a month after that, Theo became very ill and required emergency exploratory surgery on his abdomen.  The surgeons discovered an intestinal malrotation and removed slightly less than half of his colon and he was left with an ileostomy.  Theo had been in respiratory distress for his entire life leading up to this, and wasn’t able to be extubated after this surgery.  This resulted in a tracheostomy, an artificial airway created through his trachea, which requires constant care. A G-tube is also needed for his feeds because it isn’t safe for him to feed by mouth with the ventilator and his trach.


As is common in many children with Trisomy 13, Theo has a Congenital Heart Defect.  This defect is currently managed by medications and monitoring vitals but will eventually require surgery that is expected to happen during his first year of life.

Most children diagnosed with Trisomy 13 are given extremely short life expectancies.  As his parents, we feel extremely grateful at the long life Theo has lived so far.  We’ve seen the positive outcomes from having both of us at the hospital advocating on Theo’s behalf.


The downside of having both parents caring for Theo on a full time basis is the financial impact.  In order to be in Theo’s room to meet with all of his specialists, it hasn’t been possible for either of us to work while he has been in the hospital.  All of the medical staff we’ve worked with have agreed that having parents as involved as we are, has helped Theo become so successful.

Now, the unbelievable may be happening soon!  There are talks of discharging from the hospital! Theo has spent his entire life in the NICU/PICU and has never been home. As we plan for potential discharge, we are preparing to blend our world with Theo’s. Initially, Theo will go home with a trach and a G-tube and require medical equipment including a portable ventilator, suction device, an oxygen concentrator, oxygen tanks and a continuous feeding pump.

We are humbly asking for donations because even though this situation has created a financial hardship for our family, we feel so lucky to have Theo as a part of our lives. Despite being labeled with an “incompatible with life” diagnosis, Theo has shown us that miracles can happen.

Thank you to everyone who has shown us love and support during this journey!