As parents we count tiny toes and itty-bitty fingers, but it's matters of the heart that have Joseph and Brianna Rodriguez counting their blessings.
The couples baby girl, Shirley, came into the world in February of 2017 with big blue eyes, a full head of hair and a rare heart defect. Brianna remembers being twenty weeks pregnant and getting the news.
She says, “we had this really sweet doctor come and talk to us and she said 'I wanted you to know your baby is going to do great things, but there is something wrong with her heart,' and I just broke down and was like, 'oh, that’s not what you want to hear.”
Shirley's condition is called truncus arteriosus.
In a normal heart, there are two arteries. One carries the blood to the body, the other to the lungs. In Shirley's case, she only had one artery, which meant there was no specific path for the blood to get to her lungs. To repair it, Shirley needed open heart surgery at three days old.
Shirley's chances of survival are much better than they were decades ago. Since 1979, deaths from congenital heart defects have declined 39%, according to the American Heart Association. That's due in part to research, helping us better diagnose, understand and treat the tiniest of patients.
“There’s so much joy on the other side of that trauma and fear,” says Brianna Rodriguez.
Shirley's parents started a blog called, Shirley's Grand Adventure. Through the journal, the couple has been able to share precious moments of the struggles and the smiles. Along the way, they say they've found hope.
Joseph says, “It’s not been easy, but knowing, what I know now, I just feel blessed to have the experiences we’ve had and Shirley has really brought our family together.”
Shirley will need more surgeries as she gets older. Right now, there are weekly appointment for physical therapy and regular visits to her cardiologist. Through it all, Shirley isn't just learning, she's teaching.
Joanna says, “we really believe she’s the way she’s supposed to be and we’re better people because of her and she’s a strong, strong girl because of what she’s going through."
For Joseph and Brianna, Shirley's grand adventure is just beginning.
Joseph says, “there’s so much that can come out of this that’s good. There’s so much joy, so much support.”
Congenital heart defects are often diagnosed when a baby is born. In Washington State, a test is given in the hospital to look for any problems.
To learn more about CHD's, click here: http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/Congenital-Heart-Defects_UCM_001090_SubHomePage.jsp