Megan Elizabeth Barnes

Megan’s Story


                               “She gave us purpose and inspiration and was dearly loved”


Megan Elizabeth Barnes,  Trisomy 18,  Chapel Hill, NC,  7/8/1985 – 12/29/2004

MeganCollageMegan was a late-in-life surprise and a content, sweet child who blessed our lives for nearly two decades.   She completed our family in so many unique ways for Megan gently guided our hearts.   In hindsight, she had a very healthy start for a baby with trisomy 18 which was not diagnosed until she was over 2 months old.  Breast fed, gaining weight and becoming interactive with smiles, a skin biopsy was done at 6 months old because her geneticist suspected mosaicism.  The results still showed full t18.   With time, she did struggle with the health problems common to her disorder, especially frequent pneumonias.   At different times, she had surgeries for esotropia, cleft lip, hip dislocation, hydrocephalus, scoliosis and G-tube placement.  We approached cardiology about VSD surgery in 1987 or 88 but it was never repaired.  Thus, in her last 5-6 years, she needed oxygen and medications to treat heart failure, and Bi-Pap when asleep.   Early intervention, special education and therapies became a routine part of her day and our life, benifitting both her and us, and home health nursing began when she was about 8 years old.

Caring for Megan was a hands-on-education about trisomy and so much more.   She gave us purpose and inspiration and was dearly loved.  In the end, it was so hard to lose her.  Eventually we learned we had trusted the wrong doctor.  Now it is Megan who watches over us, waiting to greet us with her big hugs and smiles.    One of the early 1985 SOFT newsletters was given to us by her geneticist and we took Megan to the very first of the annual SOFT conferences just before her 2nd birthday.  It was amazing to finally meet other families and the compassionate Dr. Carey.   SOFT has been a part of our lives ever since.