Gracie’s story has been one of incredible perseverance, hope, and the importance of community. Her family is excited to share their experience in the hopes it may encourage other NICU families.
On May 7, 2018, Graice was born at just 24 weeks. She was a micro preemie, weighing only one pound, six ounces, and she was fighting for her life from the moment she entered the world.
Just days after her birth, Gracie was diagnosed with Necrotizing Enterocolitis (NEC). She was rushed into emergency surgery where doctors removed nearly 70 percent of her small intestine. From there, she experienced liver failure and a range of other life-threatening complications. The challenges Gracie faced were overwhelming, and the uncertainty of whether she would ever leave the hospital loomed over her family.
But Gracie’s parents, Javier and Gretchen Bernal, never gave up on her. They remained by their daughter’s side, following her from Methodist Hospital where she was born, to the Children’s Hospital of San Antonio (CHOSA) when she was transferred. In both NICUs, the family found strength in a supportive community.
“We were embraced by dedicated medical professionals and other NICU families. We learned that it really does take a village, and we worked hard to build the right village for our child.”
— Gretchen Bernal, Gracie's Mom
For ten months, the Bernals hoped and prayed. They gathered the right support system around Gracie, and they watched their little girl defy the odds. And finally, after 308 days in the NICU, numerous medical procedures, and ten major surgeries, the Bernals were able to take their baby home.
Of course, this was still just the beginning of Gracie’s medical journey, and it was important that her parents continued to nurture and build a village for her. So, Javier and Gretchen found the two best private-duty nurses who have become part of the family. And they explored their options for Durable Medical Equipment companies (DMEs), ultimately choosing service providers that would view Gracie as a person, and not a case number or dollar sign.
“We had to align our family with DMEs that believed in Gracie and would be part of our village,” Gretchen says, now. “Companies like Wave Healthcare help us navigate difficult situations and give the best support for Gracie to be her best, most successful self.”
Today, the Bernals are confident that they have “built a team of medical professionals and loved ones that believe in” their daughter “and see possibilities for her future.” They are so proud of how far Gracie has come.
Gracie is starting first grade, this year. She is a big sister now, and she has a big personality to match. She is fiercely independent, always wanting to do things for herself. She loves music and stories, and she has her own unique way of communicating with the world.
She still has a G-tube, braces on her ankles, and a hearing aid. She’ll be getting glasses soon, and doctors are exploring the possibility that she may be on the Autism spectrum. But her parents firmly believe that nothing will ever truly hold her back.
“There’s nothing normal about Gracie, and we’re okay with that,” Gretchen said. “I can confidently say that she’s the most beautiful, amazing, non-normal child I know.” She added that Gracie has good days and bad days, but the family faces every day one at a time.
Gretchen, Javier, and the rest of the Bernal family have embraced the path Gracie is on. And they’re proud to share her ongoing story with other NICU and special needs families. They hope to encourage others in similar situations and offer words of advice.
“You are your child’s biggest advocate. Don’t be afraid to speak up or ask for help,” Gretchen advises. “Build that village. Work hard for your child, and they’ll work hard for you. Don’t give up.”
Wave Healthcare is proud to be a part of Gracie's village.
We are honored to share her story and her mother’s words of advice to other parents of special needs children.
Written by Chealsea Hunt
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