by Sue Ann Rybak
“We are celebrating our five-year anniversary this year, which is a huge milestone for us,” said Wyndmoor resident Martha Sharkey, 38, former Chestnut Hill Business Association executive director and founder of Today is a Good Day. The organization is holding its fourth annual “Pints for Preemies” fundraiser on Saturday, April 6, 7 to 10 p.m., at the Flourtown Country Club, 150 McCloskey Rd. in Flourtown.
Martha and Paul Sharkey started Today is a Good Day in 2014 after recognizing a gap in care for the parents of families with babies in the Neo-Natal Intensive Care Unit (NICU). The nonprofit offers caring packages to families, listening sessions for current parents in the NICU, direct financial support, connecting parents virtually via “Philly Preemie Parent Network” and providing Today is a Good Day Preemie Shirts.
According to the Center for Disease Control, one in 10 babies in the U.S. is born prematurely. Premature birth (before 37 weeks of pregnancy) and its complications are the no. #1 cause of death of babies in the U.S., according to the March of Dimes. Children who survive premature birth often have long-term health problems, including cerebral palsy, intellectual disabilities, chronic lung disease, blindness and hearing loss.
Dr. Gerard Cleary, chief medical officer and senior vice president, chief of staff, for Abington–Jefferson Health, said having a baby in the NICU is “generally an acute crisis for a family.” From 2006 to 2015, Cleary was also medical director of the hospital’s level III NICU.
“It’s during the NICU journey that a lot of these feelings of guilt or anxiety will creep in,” he said. “Family members need to be able to talk to another family who have gone through a similar experience. Today is a Good Day comes and sits down with families; they have experienced loss, the experience of spending weeks or months in the NICU. It’s a very positive experience for families because you are talking to somebody who has lived through it.”
The Sharkeys found out they were expecting in July of 2010, and shortly thereafter, in November, their NICU journey began. Martha, who was carrying twins, recalled that “everything was going along smoothly” until November when “something just didn’t feel right.” She was just 23 weeks pregnant when she was admitted to the hospital after being diagnosed with an incompetent cervix and placed on bed rest.
“Our girls weren’t due to March 8, 2011,” she said. “We had hoped to stay pregnant. We knew that every minute of every hour of every day counted. We made it five and half days … when the girls decided to make their entrance into the world on Sunday, Nov. 14.”
Claire Josephine was born at 12:35 p.m. and weighed 1 lb., 2 oz.; Mary Gladys was born at 12:36 p.m. and weighed 1 lb., 4 oz. The Sharkeys were still trying to process the trauma of having two premature babies in the NICU when they met 3-year-old Sam Muscatello, a former 23-week-old NICU baby and his mother at a lunch event at the hospital for current NICU families.
She said meeting Sam gave them hope for the future, even after their daughter Mary passed away just a week later on Nov. 28. Their other daughter Claire weighted only 15 ounces at that time, but Sam Muscatello gave them hope. Claire was diagnosed with brain bleeds on day three of life. Doctors told the Sharkeys that Claire might not be able to walk or talk later in life, but Martha said they prayed and would often say, “Sam Muscatello was successful. Claire can be successful.”
After 103 days in the NICU, Claire came home. After several years of speech therapy and physical therapy, Claire graduated from Theraplay on Nov. 28, 2017, “the anniversary of Mary earning her angel wings … I couldn’t believe it. We named our organization Today is a Good Day because we would always rejoice when the doctors or nurses would say, ‘Today is a Good Day for Claire or Today is a Good Day for Mary.’”
Today is a Good Day gives out care packages that contain a journal, “On the Night You Were Born;” a board book, “One Day at a Time” bracelets, a water bottle, lip balm, hand sanitizer and Bonding Squares.
“Whenever you have a preemie or a baby in the NICU, people often don’t know what to say, or they say ‘I’m sorry,’ We say ‘Congratulations’ because we think every birth should be celebrated … Not every day in the NICU is a good day. We remind parents to take one day at a time. All you have is today. It is a marathon, not a sprint.”
When the Sharkeys founded the nonprofit in 2014, they initially focused on providing personal and financial support for families of premature babies in the NICU, but they have since expanded their mission to include parents of all babies in the NICU. After delivering Martha Rose at 37 weeks on July 8, 2015, the Sharkeys’ discovered last May they were expecting again.
Their son, William Richard, was diagnosed with Trisomy 18, also known as Edwards syndrome, a common chromosomal disorder due to the presence of an extra chromosome 18. Martha recalled receiving the news from her doctor on July 27 that the blood test had come back positive for Trisomy 18.
On the Today is A Good Day blog, she wrote, “It’s hard to put into words the feelings that wash over your body when receiving news like this.” William Richard was born on Dec. 17, 2018. “He was with us 91 minutes before he gained his wings,” she said.
In another blog entry, Martha wrote, “Through our lives we meet others who have traveled not only the NICU journey but also the journey of losing a child. The difficult moments, the ‘what ifs’ will always be there.”
For more information about Today is a Good Day, go to todayisagoodday.org