I’m writing this letter on behalf of the Pula family. In late October Jimmy and Jill Pula received devastating news that their unborn child was diagnosed with Myelomeningocele, the most severe form of spina bifida. Myelomeningocele is a birth defect where there is incomplete closing of the spine and membranes around the spinal cord, which could lead to developmental problems and mobility issues. Because of the incomplete closure of the spine, the baby was also developing Chiari II Malformation with hindbrain herniation, where the brain was being pulled down the back of the neck and spinal column.
One way of minimizing future problems for the baby was for Jill to have fetal surgery performed by a specialist at the Children’s Hospital of Philadelphia. The other option was for immediate surgery once the child was born to close the spine. Because of potential serious mobility and cognitive disabilities if they waited to have the surgery postnatally, Jimmy and Jill decided to have fetal surgery.
The surgery was performed at Children’s Hospital of Philadelphia on November 2, 2016 and was a success. Jill then spent the next 10 weeks on bed rest in Philadelphia while Jimmy traveled back to Buffalo for work during the week and spent his weekends driving down to Philadelphia to spend time with his wife. On January 16th, 2017, at 33 weeks pregnant, Jill gave birth to a beautiful 5lb. 17.5″ baby girl. Once Hannah Jean was born, the doctors noticed that her incision site from the fetal surgery had not fully healed and at only a day old, she had to go in for a second surgery to close the fistula. It was during this surgery that the doctors found that Hannah was born without her 2 lowest vertebrae which could affect her mobility as she grows.
Jill and Hannah remained in the NICU in Philadelphia until February 23, when Hannah was released from the hospital to make her journey home. After spending 16+ weeks away from home and out of work the financial burden is taking its toll on the Pula family. While Jimmy continued to work as much as he could, the medical bills, medical supplies and travel expenses have added up. In addition to already incurred medical costs, Hannah will need weekly doctors’ visits with specialists to monitor her motor function and brain development.
We’re counting on support from the local community for donations. Donations will be raffled off at the Benefit for the Pula Family which is being held on Saturday April 22nd from 12-3pm at MTK, 451 Elmwood Avenue. All proceeds will go to the Pula family to absorb some of the financial hardships.
Thank you in advance for your support.
Please, if you can help out that would be amazing!!!