On Sept 7, 2008, as I was out of town, our 2 1/2-year-old daughter Bella and her mom were playing at home and getting ready to go to the zoo. Bella told mom she wasn't feeling good, asked for orange juice for her fever and soon began vomiting and holding her head. Within 15 minutes Bella collapsed in her mothers arms unresponsive. After calling 911, paramedics arrived in seconds and they rushed Bella to St. James hospital and trauma center.
She was stabilized and intubated at St. James where her mom was told by the ER physician that it was a matter of life and death. They were dispatching a helicopter from the Air Angels to bring her to University of Chicago, Comer children's hospital, where they were better equipped for such a dire case, and there was a chance she may not survive the flight.
Bella survived the flight to UIC and was brought immediately to the operating room where surgeons were waiting to insert a ventricular shunt/ drain to relieve the excessive blood putting pressure on her brain. She was then brought to the intensive care unit at UIC where she remained in a coma.
I was just arriving at UIC hospital, where the Neurologists told us that Bella suffered an AVM rupture (Arteriovenous Malformation) deep in her brain that caused a severe hemorrhagic stroke. This left her near death and possibly with severe permanent brain damage. They said this AVM was something she was born with and it has to be removed or it can re-bleed at anytime, but operating so soon was too risky. So we would have to wait for the brain swelling and blood to clear up. We asked when Bella would wake up they said "6 days, 6 weeks, 6 months... there's a chance she may never wake up!" We were devastated.
There were many obstacles and hard decisions that had to be made around the clock. Every scenario turned out to be the worst-case-scenario. Bella's mother and I lived at the hospital, not able to leave Bella's side. Our family and friends stood by as we held 24hr bedside vigil. We waited weeks until finally an eye started to peek open and little by little over days she woke. But, there was no "purposeful movement" and now we were starting to be able to see how severely Bella was affected by this injury. We were told many times this would be a marathon not a sprint. Doctors slowly started to wean Bella off of life support over a couple weeks and she proved to be able to breath on her own.
When Bella was strong enough, the recommendation was for her to be transferred to an in-patient physical re-hab hospital while awaiting her big surgery to resect the AVM. She was transferred to La Rabida in Chicago but she was still in the very acute stages and we had her brought back to UIC a couple weeks earlier than planned because of complications.
On Nov 9, 2008, one day before Bella's 3rd Birthday, She underwent brain surgery to resect the AVM deep in her cerebellum. Surgery to remove the damaged vessel was still very risky. We were told that If she was to bleed again it would be catastrophic. If they had to take the whole vessel she would lose the use of her legs permanently. Surgery went without any major complications, but the most severe brain damage had already been done.
We all came home from UIC Nov. 19, 2008 and on Nov 20, 2008 her mother gave birth to our son, Liam. He was born with an under-developed ear and mandible, unknown to us prior to his birth. He was diagnosed with Microtia. Further study of Liam's condition brought doctors to diagnose him with Goldenhar syndrome. In May, 2010 doctors found a tumor on Liam's brain stem in an MRI image. In November 2010, after months of watching it grow, doctors determined that the tumor must be resected and biopsied.
On Dec 10, 2010 our son Liam underwent brain surgery at Children's Memorial hospital to remove his brain tumor. Part of the tumor had to be left inside his brain because of the dangerous proximity to the brain stem.
Liam is currently in physical therapy but we are told there will be lasting effects from the brain tumor and he will require many surgeries in the future to repair his facial malformations. Brain surgery has left Liam with permanent right side weakness of his whole body. He continues to undergo Complicated MRI's to watch his tumor, our hope is that it does not increase in size.
Bella remains confined to a wheel chair unable to speak. She suffered hydrocephalus six months after she came home and has had numerous surgeries and hospitalizations since. Isabella has improved and continues to make little strides but remains very disabled and requires constant medical treatment and physical therapy as she fights to regain her motor skills and speech.
Donations we receive are being used to buy equipment, pay medical bills, and help the children with the extreme challenges and hardships they are faced with.