After over two years of being in the hospital battling complications from gastrochisis, Lilly Hackworth will be returning home to her parents on Monday, Aug. 12.
The seven-year-old daughter of Guy and Ariel Hackworth of Morrisonville, Lilly was born on July 20, 2012, with most of her intestines outside of her body. Following many complications, she received a small intestine transplant five days before her fifth birthday.
Lilly fought for her life and faced rejection for almost a year, before doctors removed the transplant, her gallbladder and the remainder of her damaged intestines in June 2018. She was then placed on both an oscillator and ventilator to assist her with breathing, as well as a medical induced coma for one month in an effort to help her heal.
Just before last Thanksgiving, Lilly was transffered to Ranken Jordan Pediatric Bridge Hospital in Maryland Heights, MO. Although she still had a long journey ahead, her family was rejoicing at the impovements she had made and along with Lilly's medical team, set a date to return home March 1.
In Februrary, however, the Morrisonville girl's heart stopped beating and the nurses performed CPR on her small body for nearly ten minutes to revive her. This particular setback caused her one month in the PICU, when an MRI showed brain damage to her central basal ganglia, which facilitates movement and inhibits competing movements.
"Because her brain was trying to wake up, she had multiple seizures while in the PICU," said Lilly's mom, Ariel. "She ended up having Chorea Form movements, where her arms, legs and mouth move in a dance form uncontrollably."
With the help of seizure medication and extensive therapy, Lilly is slowly regaining her strength. While she may not be able to take on some tasks like talking or wheeling herself around in her wheelchair, her family and medical team are happy she's able to use a communication device that allows her to point to what she wants or relay how she's feeling.
When the gastroschisis warrior arrives home, she will still have a trachea, broviac central line in her chest where she receives nutrition, a g-tube and wheelchair, but she no longer requires the use of a ventillator.
"She has come a very long way," said Ariel.
Therapists are currently working with Lilly on regaining her motor and fine motor skills, such as learning how to grasp things, walk, talk and even sit up.
"We are excited for her to finally come home, but she does not know the new house or even her new room yet," said Ariel.
Amongst the devastation of caring for their ill child, the Hackworths have faced many other hardships including losing their home when the trailer park in Raymond closed and employment due to tending to their daughter's needs.
"It has been a very hard road on all of us," said Ariel. "We cannot wait to see the day she comes home. We are very anxiously waiting for that day to come as it is slowly getting closer to the date."
Donations to the Hackworth family may be directed to their Go Fund Me account at www.gofundme.com/5gbsic0.