Our life changed drastically in December 2008 when our baby girl, Rebekah, was diagnosed through amniocentesis around 20 weeks gestation as having ‘full’ Trisomy 18.

Our Rebekah Faith was born at 38 weeks by induction on 4/21/09, weighed 4lb 6oz, and was 17” long. After 7 days in NICU to establish feeding, address
jaundice, and assess her health, she came home with us on an apnea monitor and with a N/G tube for feeding. She weighed 4lb 1oz. An oxygen monitor was then added to the entourage of medical accessories. At the 2 week mark, she was one ounce past her birth weight and appears to be doing well overall except for several bouts of bradycardia (low heart rate), and apnea (stop breathing) during each day that requires physical stimulation to reverse. Those episodes got
worse, and she was admitted to the PICU at 6 weeks old. At about 7 weeks, it was determined that she had severe obstructive apnea and the easiest and most
effective treatment would be a tracheostomy. She got a trach and g-tube, and we haven’t looked back since!

Every day with Rebekah is a blessing from God. In utero, she was diagnosed with a VSD hole in the heart, only one kidney was ever seen, brain abnormalities, and she has two rocker-bottom feet with one twisted to the side from malformation of the bone. Once she was born, it was verified that her VSD had closed in her heart, and a renal ultrasound showed TWO kidneys (she has a horseshoe kidney)! She actually fed exceptionally well by bottle, another exception to most T-18 kids. However, she had so many bad apnea episodes that we nicknamed her ‘Blue Belle’!  After several studies, we determined she had a severe upper respiratory obstruction.  We felt the best solution at the time was a tracheostomy, and she got a g-tube at the same time in anticipation of feeding issues with a trach.  Sure enough, once she was trached, she was unable to suck as strong as she needed to keep feeding exclusively by mouth. Doctors did not think she would live long. But the trach made such a different and she grew healthy and seems to have a very good immune system for a trisomy child.

As of 2/9/12: She is now almost 3 and is doing well health-wise. Despite some defects, her kidneys (horseshoe) and heart ( have been fine despite s. Her legs are very strong but her arms are weak and she does not like to bear weight on them. So she does not sit up on her own but she can roll and tripod sit. She is starting to really push off on her legs and can go from sitting to standing. Still working on maintaining it though. She understands much more than she can communicate, and has begun to answer yes and no questions with a shake of her head, and she has is very willful when it comes to what she wants/doesn’t want and likes/doesn’t like!  So while she is technically ‘nonverbal’, she is very communicative!

Rebekah Faith is ‘Redefining Incompatible With Life’ everyday!