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“However, our Rebekah Faith had a different plan and was born alive and fighting.”
Rebekah Faith Budd, Trisomy 18, Greenville, SC, USA, 4/21/2009
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. When we learned that she had less than a 10% chance of making it to birth, and probably less due to the many markers she had, we faced dark days as we planned a funeral instead of a birth. There were lost dreams of princess balls with Dad and shopping and nails with Mom.
However, our Rebekah Faith had a different plan and was born alive and fighting. In utero, she was diagnosed with a VSD hole in the heart, only one kidney was ever seen, brain abnormalities & cysts, and she has two rocker-bottom feet with one twisted to the side from malformation of the bone. She was born at 38 weeks by induction on 4/21/09, weighed 4lb 6oz, and was 17” long. 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. 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 1 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 so bad that we nicknamed her ‘Blue Belle’! She was admitted to the PICU at 6 weeks old. We were told she had central apnea and there was nothing that could be done. But we didn’t accept that answer since it was a guess, at best. At about 7 weeks after requesting testing in many areas, it was determined that she had severe obstructive apnea! The easiest and most effective treatment would be a tracheostomy. She got a trach and g-tube, and we haven’t looked back since! 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.
Every day with Rebekah is a blessing from God! Our children adore their baby sister and she brings much joy and love to our household. We thank God for this precious child and the path we are on with her. Rebekah Faith is ‘Redefining Incompatible With Life’ everyday!
As of 2/2012: She is now almost 3 and is doing well health-wise. Rebekah has only had one additional surgery since her trach/g-tube, and that was an emergency surgery for bowel obstruction a few months after her 2nd birthday. Despite some defects, her kidneys (horseshoe) and heart have been fine. She does get frequent UTIs and takes prophylactic antibiotics as a preventative measure. 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!
As of 2/2013: Rebekah was weight bearing very well last fall and we began gait trainer use. Although she won’t move her legs independently, we feel this will eventually come with much practice. Her feet issues, however, cause balance issues and we have had a battle with orthopedists trying to get agreement to fix them. In addition, Rebekah has scoliosis that has increase into a 40/40 degree S curve and she wears a brace. In late November 2012, Rebekah broke her femur clear through! This happened during normal activities and was a shock. She spent 6 weeks in a spica cast and her bones are on their way to healing. However, this has set her progress back some in the areas of independent standing and sitting. Rebekah has also overcome another bowel obstruction, and received ear tubes since the last year. Although still considered “non-verbal” in her communication, she is using switches and making decisions and choices. She amazes us everyday and has far surpassed anything the doctors ever expected. We, on the other hand, expect much more to come!