Trinity's Story

Last year we were blessed with the birth of our third child, Trinity Elizabeth. Trinity was born on March 10th, 2009. She wasn't due until June 2nd, but she just couldn't wait to meet us. She came 12 weeks early.

Trinity's weight at birth was 2 lbs. 11 oz. and she was only 15” long. She spent the first 15 weeks of her life in the NICU at Community Medical Center. Trinity was diagnosed with Chromosome 13q Deletion, a rare chromosomal disorder.

Trinity is missing 150 genes on the long arm of her 13th chromosome which includes the RB1 gene. This gene helps fight off retinoblastoma; malignant tumors that can form in her eyes.

Trinity is currently dealing with:
• Developmental Delay - After a whole year, she is just now at a 2-3 month development.
• Hypotonia - Low muscle tone, she's not able to roll over yet and goes to PT 2 times a week.
• Small Stature - She currently weighs 14 lbs. 15 oz., 3% of an average healthy baby her age.
• Deafness - She has 75% hearing loss and must use hearing aids.
• Retinoblastoma - She Sees an Eye Doctor every other week.
• Swallowing Problems - She Sees a Speech Therapist once a week and is fed with a G-tube.

It's been a really rough road. Trinity has had 3 stints in the hospital since she was finally released from NICU; July, November, and in February. During those times she was diagnosed with:
• Urinary Tract Infection
• Influenza A
• H1N1
• Pneumonia
• Double Ear Infections
• Pink Eye
• RSV

Some children associated with Chromosome 13q Deletion do not live through their teenage years. Other effects we hope Trinity never experiences are:
• Seizures
• Autism
• Blindness

For now, we’re happy to announce that little Trinity is home and healthy!! We enjoy our little angel just as much as her older brother (Kaleb, 7½ ) and sister (Sydney, 2½ )!! Trinity is a fighter – our mini Rocky Balboa!! We’re so happy she became a part of our lives - the missing link that completes our Goldbar family!!