Hearing the heartbeat of your first child is one of the most exciting times for an expectant couple. Not for New Milford's Fire Chief, Jeremiah Nolan, and his wife, Theresa. That's when they learned that their unborn child had a congenital heart disease.
"It was at our 20-week ultrasound that we were told that our baby was seriously ill with a congenital heart defect," Theresa Nolan said.
It was then that the doctors presented the option of terminating the pregnancy, knowing that, if born, the baby may not survive. At least not without a series of open heart surgeries.
"Terminating the pregnancy was never an option," Nolan strongly pronounced. "Never an option."
Instead, Nolan and her husband embarked on the journey of celebrating the life within her and, taking every precaution, prepared for the baby's birth by arranging for delivery in the Special Delivery Unit at the Children's Hospital of Philadelphia. Through the group "Little Hearts" the Nolans were connected with the Congenital Heart Defect (CHD) Coalition who had a chapter in North Jersey and gave enormous support to the Nolans.
CHD is a national organization that provides support, education, resources, networking, and hope to families who have, or are expecting, a child with a congenital heart defect.
Joshua was born on July 15, 2008, at 33 weeks, weighing in at four pounds. Two days after his birth he had open heart surgery. Because he was so small, there were complications with this surgery, so he had a second operation days later. Remarkably, by the time he was three weeks old, the Nolans brought their son home.
While at home his oxygen got low, and he had to have a transfusion.
"But he was doing really well," Nolan said.
However, at two months he was struggling to breathe and, not having time to get him to The Children's Hospital in Philadelphia, they rushed him to Columbia Presbyterian Hospital.
"We did everything we could do for him, but his heart was too weak to continue." Nolan said. "We have no regrets."
Joshua passed on September 16, 2008. He was two months, one day old.
The CHD Coalition also provides families with boxes for babies that pass where families can keep the baby's footprint, lock of hair, birth cap and swaddling blanket.
Nolan explained the importance of this box as invaluable to parents who have so much on their mind that they often forget to record and collect the ordinary momentos of birth, because they are so focused on the death.
The Nolan's also gave permission for an autopsy to be preformed on Joshua hoping that the medical exploration of his heart might someday save another baby's life.
To honor Joshua's life, the Nolan's will once again be participating in the annual CHD Awareness Walk as team 'Joshua's Legacy' to raise awareness and money to advance CHD research.
Nolan explained that the money raised goes not only to research on young hearts, but also on those children who have survived, yet medicine has not kept pace with their disease.
"The first year that we organized 'Joshua's Legacy' I was pregnant with our daughter Juliette," Nolan said. "So, she's been walking since the beginning."
The walk is not only a fundraising event for CHD, but also a fun family day out with activities for all ages.
"We try to remember and be grateful for the time that we had with Joshua," Nolan said. "At least we had some time with him to be first-time parents."
The CHD walk will take place on September 30 at the Ridgewood Duck Pond in Ridgewood.
Particiapating in this annual walk keeps the memory of Joshua alive and allows his little sister Juliette to celebrate his life.
"Sharing our story helps us to keep Joshua in our lives in some small way," Nolan said.
And gives cause for hope to all those parents whose children's hearts are not whole.