Olivia Torian (right) and her sister Sydney enjoy each other during the Easter holiday. Olivia Torian was born with Edwards Syndrome, a rare genetic disorder in which 95% die before birth. Olivia is considered nothing less than a miracle by her doctors and nurses. She has been in Mercy Home Care since her birth over one year and four months ago. Tara Torian, Olivia’s mother, has become an advocate for Guardian Angel, the fund-raising program for Mercy’s Pediatric Home Care. The Point Clear Polo Foundation has designated Mercy’s Guardian Angel to be the main beneficiary of the 2009 Polo Classic.

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.

Olivia was referred into Mercy’s pediatric hospice care. Since 1998, Mercy Medical’s pediatric home care has served more than a thousand critically ill children. It was the first and one of the only programs in the area that solely focused on delivering home healthcare, palliative care and hospice care to children in Mobile and Baldwin counties.

“Mercy’s homecare was a Godsend for our family. Kim, our home health nurse, came weekly to check Olivia’s vitals and weight, confirming for us that she was okay,” explained Tara Torian, Olivia’s mother.

After several months in Mercy’s hospice program, Olivia had thrived and the family requested that her doctor transfer Olivia into Mercy’s home health program.

“Our JOY was beyond words when Olivia turned a year old. She can see, hear, move, and smile. Our doctors have told us she is nothing less than a miracle. Obstacles are still in the way such as pulmonary hypertension, but God has used this child for his honor and glory. A year is a milestone for her condition,” said Fonteberry. “How blessed our family has been to be chosen by God to care for his precious little angel.”

At more than a year and four months, Olivia is doing very well and receives physical and occupational therapy.

“Mercy’s Home Care has been wonderful because it keeps us from having to take Olivia to the doctor’s office and exposing her to germs. Mercy’s physical therapist sees Olivia twice a week. The Mercy staff continually educates us on ways to care for Olivia, helping us to prepare Olivia for her next level of development.

Mercy Medical provides care to any child in need, no matter of their family’s ability to pay. Because Medicaid or private insurance doesn’t always cover many pediatric home care services, sometimes more than 70 percent of these costs are funded through Guardian Angel, a Mercy fundraising program. The Torian’s experience shares how vital Mercy’s pediatric program is to the community.

“Mercy Medical has the only pediatric home care program in Mobile. I highly recommend Mercy to anyone who is in need of home care, especially for children because of their pediatric expertise. The Mercy staff who started out as our nurses and therapists, are now our good friends,” said Torian.

The Point Clear Polo Foundation has designated Mercy’s Guardian Angel to be the main beneficiary of the 2009 Polo Classic to be held the weekend of October 23 through Sunday October 25, 2009. If you are interested in participating or volunteering for this community benefit, or would like to support Guardian Angel, please contact the development office at 251-621-4884 or visit www.mercymedical.com.