After four devastating miscarriages, Courtney Hayes, 33, and her husband Josh were shocked to discover that they were pregnant with a baby boy. The couple, who had already been through so much, was almost afraid to hope for the rainbow at the end of their storm.
And unfortunately, their greatest fears were realized when they found out their son had a heart defect called Truncus Arteriosus, a condition in which the heart has only one artery instead of two. Although they were devastated and worried about their son’s future, the couple vowed to do everything they could to give him the best start possible. Hayes met with specialists and the couple moved to Philadelphia in order for their son to receive immediate medical care at Children’s Hospital of Philadelphia, including the heart surgery he would need following birth.
The time leading up to their son’s birth was filled with uncertainty and confusion. Hayes had trouble with her platelets dropping and her doctors feared not only that an epidural would be unsafe, but that a C-section could put her at risk for bleeding to death. While general anesthesia would be necessary, it could be prove dangerous for their son’s fragile heart.
While the odds seemed stacked against them, Courtney was able to birth her son vaginally. The experience was an emotional one for the mother who has dreamed of holding a baby in her arms for so long.
This picture of Courtney and her baby boy summed up all the years of grief, heartbreak, confusion, hope, and love — all in one instant. With that single tear, the love of a mother who has given everything to hold her son to her own heart, speaks a thousand words.
And while Hayes was able to breathe a sigh of relief that her baby boy was here, the surprises weren’t over yet. After Jude was born, she and Josh found out that their son also has 22q.11 deletion syndrome (otherwise known as DiGeorge), a condition they were initially told had been ruled out. The genetic disorder means Jude will be on the spectrum, although different degrees and symptoms can vary widely among individuals who have it.
“Watching his chest rise and fall and seeing him fight for each breath, knowing he has yet another thing stacked against him, just shattered my already tired, beat-down heart,” wrote Hayes of learning of her son’s new diagnosis.
On March 30, at only three days old, Jude underwent open heart surgery to repair his genetic heart condition. The surgery, much to everyone’s relief, was a success and he stabilized quickly. Although he has had difficulty learning to suck, Hayes has been pumping breast milk and tirelessly working with the medical team to help supply her son with her milk.
“I have never experienced such fear and heartbreak as we handed him off, nor such relief when we heard the surgery was a success,” said Hayes of her son’s surgery. The time following his surgery was one of exhaustion and healing for both of them, and only days after having open heart surgery on his days-old heart, little Jude showed off what would become his parents’ new favorite sight — a big smile.
At the moment, Jude is stable and Courtney and Josh are preparing to take their son home to a world without doctors and nurses and assume the challenge of a new life as parents to one very special little boy. As a mother of a son with special needs, Hayes admits she is nervous about how the world will see her child, but is gathering hope from the hundreds of people who have supported their family along the way. For this reason, she says she will continue to share the story of Jude, his fighting spirit, and how he is bringing smiles to the hearts of so many.
“I fear people will look at my beautiful baby differently, or that they will call him by his label,” she wrote. “As his mother, I have been given an opportunity to protect him and also to share his story in a way that may make a difference in this world…I ask that when you look at him, you don’t see his syndrome, but you see a boy full of endless possibilities.”
If you would like to help the Hayes family with medical expenses, you can donate through their YouCaring page.