On the evening of February 19, 2008, we welcomed our precious Leila Julianna into the world, born with a clean bill of health. We spent the typical three days in the hospital and then came home to settle in. After a busy evening at home, we all fell asleep. You never think when you fall asleep, that when you wake up, your entire life will change. But ours did. I awoke in the night to a chilling silence and a terrible feeling inside.
The first second I looked at Leila, I knew something was wrong. She looked pale & lifeless, and when I picked her up, her arms & legs went limp. I screamed for my husband Alby, and he checked her pulse, but there wasn't one. Alby started CPR while I begged the 9-1-1 operator to hurry with help. I counted aloud as my husband did compressions and mouth to mouth on our daughter. More than 10 minutes passed before EMS arrived. A firefighter scooped Leila up in his arms, and they were in route to the hospital.
During the ambulance ride, a paramedic continued mouth-to-mouth resuscitation and an IO was inserted in Leila’s leg. We chased the ambulance & arrived at St. Francis Medical Center right behind them. It seemed like forever that we waited outside while an emergency room filled with over 15 medical staff worked on Leila. Dr. Sara Gay, the pediatric hospitalist, finally came and called us back. We were able to see Leila, with all her wires and tubes everywhere.
Dr. Gay explained that Leila had gone into full cardiac arrest in her sleep. When paramedics arrived, she had only pulseless electrical activity and narrow, complex bradycardia. They had restarted her heart once she arrived at the hospital and advanced life support measures were keeping her alive. Leila would need to be taken to St. Mary’s Hospital, over 30 minutes away where a PICU was available, but would likely not survive the trip.
Leila was stronger than they thought, though, and she made the trip successfully. Once we were settled in our PICU room, Dr. Gay explained that they would be administering a special brain cooling treatment on Leila called therapeutic hypothermia. They induced a coma with phenobarbetol and placed cold packs all around her body. The process lasted about 24 hours.
But after the cooling, four long days went by on advanced life support and although the phenobarbetol appeared to be out of her system according to her bloodwork, Leila never woke up. Every day, pediatric neurologist Dr. Donald Taylor would perform one to two EEGs, all of which showed no brain activity. Things were not looking good, and the doctors continually prepared us for the worst outcome…Leila was going to die.
On her one week birthday, the doctors explained that Leila's brain injuries were too severe for any recovery. She had no response to pain or light. She could not hold her own blood pressure or body temperature. She had no gag/cough reflex. Her EEGs were still flat and an abnormal CT scan confirmed our fears and showed extensive and irreversible brain damage. It was suggested that we remove Leila's life support and say our goodbyes.
It's by far a decision no parent should ever have to make. Our decision did not come easy. The doctors reinforced that Leila was no longer in her little body, but we still couldn't bear to say goodbye to our baby girl, so we declined to sign the DNR.
We finally asked if we could possibly try to wean Leila’s life support, but to take all measures to reapply it if she became unstable. The doctors agreed to follow our wishes and the support was slightly withdrawn little by little. The nurses warned us that Leila would take her last breaths during this process, and they presented her with a tiny pink gown, a hat and a blanket, so she could leave this earth as adorable and perfect as she'd entered. The first try was unsuccessful.
Then we tried again…they first began to lower her dopamine in small increments. Overnight, Leila’s arterial line infiltrated and they realized in the morning that she had not been getting her dopamine at all. She was holding her blood pressure steady and stable on her own.
Throughout her stay, Leila had made jerking movements and we would react like any parent, thinking she was going to wake up. But the doctors and nurses explained these were just “myoclonic” nerve movements that were not purposeful and meant nothing in terms of her recovery.
But as they continued to lower her respirator settings, Leila moved her left arm up slowly. We quickly called in the doctor, convinced that this was a purposeful movement. Dr. Gay agreed to conduct another EEG and take it from there. The results showed some minimal activity, but the neurologist was still skeptical and considered the activity to likely be “bad activity” caused by possible seizures & brain swelling.
As the support continued to lessen, Leila finally opened her eyes. They were deviating to the back of her head and she had no eye contact or responsiveness to light or sound. At this point, the doctors were certain Leila would be “vegetative.” They said to prepare for severe cerebral palsy and that she would never walk, talk, or even know who we were.
We wondered if we had made the right decision, only to see our child have no quality of life. Her EEGs were still abnormal, but Leila started pulling at her tubes and making gradual progress. After a few more days, she was finally extubated. She became more aware of her surroundings and began crying, looking around and responding to our voices.
After a long month of recovery in the PICU, we prepared to take Leila home. The long term prognosis was still grim. She would need her feeding tube forever, a tracheotomy and would have major mental and physical disabilities. Whether it was a mother’s instinct or denial, something told me Leila was going to be just fine.
Over the next 12 weeks, Leila began rolling over. She ditched her feeding tube and started eating normally. Eventually, she started to sit up and then crawl. When she spoke her first word, “dada,” I knew it was her way of thanking Daddy for being her hero that fateful night.
We enrolled Leila in an early intervention program almost immediately after coming home. We thought it was important to give her every opportunity to thrive by having therapy to help her along.
We returned for more testing on Leila and she was reported to have a completely normal MRI. Leila has continued to blossom over the past year and a half…she’s now standing, cruising around, taking steps on her own and saying lots of words. Other than a slight developmental delay, she has no cognitive disabilities at this time. She looks and acts like your typical baby…except that she's perfect to us.
I wanted to share our story because we know that Leila's life has a HUGE purpose. Her survival spreads word to parents and caregivers everywhere that knowing pediatric CPR can mean the difference between life and death.
We are currently in the process of starting a foundation in Leila’s name to increase awareness and education on pediatric bystander CPR, as well as informing the public about their treatment options with therapeutic hypothermia, something we never even knew existed before Leila’s ordeal.
Her successful recovery also raises an important discussion about that burdening decision that patient families are forced to make…when to pull the plug. It’s clearly not a black and white issue, and there is no right or wrong answer. But it’s our stance that every life deserves a second chance. If the doctors that treated Leila had not worked vigorously to restart her heart, had they not initiated the therapeutic hypothermia treatment, had they given up…you wouldn’t be able to see Leila’s beautiful smile that will spread hope to others throughout her life for years to come.
By Kristina Natalini, Leila's Mom
For more information, visit www.leilafoundation.org.