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Diagnosed at age 3 Months

Respiratory failure/Ventilator dependent
Gracie Poole

Gracie Poole has amassed quite the bead collection in her eight years. Each “Bead of Courage,” unique in size, color and shape, tells a story grit, love and faith; each represent a treatment completed, a hardship conquered. One could say the beads are a power source for the adventurous 8 year old who has overcome every hurdle tossed in her path.

Gracie was born in October 2007 at 36 weeks gestation and admitted to the Neonatal Intensive Care Unit at Children’s of Alabama, where doctors diagnosed her with patent ductus arteriosus, an abnormal circulation of blood between the two of the major arteries near the heart, and associated pulmonary hypertension.

At three months old, Gracie was readmitted to Children’s with bronchiolitis, respiratory failure and acutely worsened pulmonary hypertension. She required a tracheostomy and chronic respiratory support in addition to chronic therapy for her pulmonary hypertension.

Gracie spent most of the first year of her life in the hospital before she was discharged home with ventilator support under the care of her parents, Jennifer and Brian, who, with assistance from Gracie’s nurses, learned to care for their daughter.

“She’s really just a normal eight year old, the baby of five siblings who doesn’t see she’s different from them,” Jennifer said. “She loves to ride bicycles, swim and play on the trampoline, but she doesn’t have her siblings’ endurance or stamina. She has to stop and take breaths and get back on the ventilator.”

Jennifer said her daughter looks forward to having a double lung transplant “because she wants to have good lungs and do more.” Doing more means meeting Willie Robertson of “Duck Dynasty” fame, swinging higher, dancing longer and learning fiercely.

“Her teachers come to our house because of her immune system now. She wants to be able to go to school,” Jennifer said.

In August 2016, Gracie and her family learned she would be listed for transplant in the next few months. It was welcome news after Gracie’s father, Brian, was diagnosed with a benign brain tumor in April 2016. Brian suffered a massive stroke after surgery and part of his skull was removed; intensive rehab followed. The family will move forward with Gracie’s transplant journey after Brian has his skull reattached in the fall.

Throughout the adversity, Jennifer said the Children’s staff – from surgeons and specialists to nursing staff and social workers – have been a source of strength and encouragement for Gracie and the whole family.

“We actually call Children’s our second home. Gracie’s whole medical team has been a godsend to us,” Jennifer said. “It’s a miracle Gracie is alive. Of course, God has allowed her to live, but without her amazing doctors, she wouldn’t be here.”
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