Joy beyond words
Baby Olivia’s parents were caught by surprise. They learned that she had Trisomy 18 a few days after her birth and were advised to follow a perinatal hospice course of treatment. This they did, but Olivia had more surprises. She did not die. What had been expectant palliative management developed into pediatric home care, and beyond. Some fear that perinatal hospice will by its nature cause some children to die sooner than they might have with more aggressive care. This will likely be the case with some infants and in others, such as Olivia’s, it’s not.
Nothing less than a miracle
May 04, 2009
On December 3, 2007, the Torian family welcomed the birth of their second daughter, Olivia Kate Torian, weighing 5 lbs, 3 ounces. Immediately the medical staff at the hospital became concerned because Olivia wouldn’t cry. The medical team observed Olivia very closely and ran tests. Within a few days, Olivia was diagnosed with Trisomy 18 or Edwards Syndrome. Edwards Syndrome is a rare genetic disorder caused by the presence of all or part of an extra 18th chromosome. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders. Around 95% of Edwards Syndrome babies die before birth. Of the live-born infants with Edwards Syndrome, only 50% live to 2 months. The median lifespan of is 5 to 15 days.
The Torians were devastated. The medical team gave the family no hope, sharing that Olivia may only live days, weeks, or months. The doctors also thought Olivia may be blind and deaf.
“The doctors told us Olivia would die. These children are usually miscarried or live only hours after birth,” explained Merri Ann Fontenberry, Olivia’s grandmother. “As several days passed our anxiety levels were high. Then God spoke to our hearts and gave us a sense of peace. We knew Olivia would come home and God was not ready for her yet. She had a purpose in this world.”
Due to the stress on her body, Olivia was not able to nurse. She was fed through a tube placed orally into her stomach.
“We had so many questions: How could we care for this baby? Would she be in the hospital for the rest of her life? Olivia had a big sister, Sydney. How do you explain to a three-year old that her new baby sister is dying,” said Fontenberry. continue