Hundreds of prayer warriors watched their social media accounts this past April for updates on a baby named Francis Roy Lilly. The “little lion,” as he was affectionately called, was fighting for his life at Inova Fairfax NICU. The rollercoaster began for the newborn and his parents, John and Kara Lilly, April 1 shortly after his birth.
According to Kara, after months of an uncomplicated pregnancy, she started going into labor three weeks early. She was admitted to StoneSprings Hospital Center in Dulles and received an epidural. Kara lost track of time after that, but remembered a nurse came in for a vitals check. That is when she first heard those dreaded words — “I can’t find the heartbeat.”
“Suddenly, all the nurses were in the room,” said Kara. “Then they were rushing me into the operating room for an emergency C-section. I was just praying, ‘Lord, please save my baby,’ the whole time. It took 18 minutes for the doctors to resuscitate him.”
Kara remembers hearing Francis cry twice before she started to go into shock from blood loss. Doctors worked to save her life while Francis, who had swallowed a significant amount of meconium, was flown to the NICU at Inova Fairfax. He was baptized and confirmed that day by the couple’s friend, Youth Apostles Father Peter Clem, parochial vicar of the Basilica of St. Mary in Alexandria.
According to John, reports from the doctors showed their baby had extensive brain damage from the birth, some internal bleeding that required two blood transfusions, as well as seizures. The prognosis was not promising.
“I was so desperate for prayers,” said Kara. “That’s why I turned to social media. I could feel in my heart these people praying fervently for my son.”
The family posted updates on Carebridge.com, which were shared on Facebook and other social media sites. Their posts were liked hundreds of times and shared through local Catholic networks.
“We have a wide community,” said John. “I am in Youth Apostles and sent out an email to the brothers in the community asking for prayers.” They also reached out to their friends from George Mason University in Fairfax, their parish, St. Elizabeth Ann Seton in Lake Ridge, and friends from their time as diocesan employees and volunteers.
Promises to pray flooded in, but bad news arrived April 16. The post on caringbridge.com read, “Thank you so much for your constant prayers … We received devastating news from the doctor yesterday that they believe they have done everything they can at this point. Francis’ continued seizures indicate that his brain injury is only worsening, and the last MRI showed that his brain cells are dying. We are preparing to say goodbye to him soon and are leaning every bit on the Lord during this Holy Week. We ask that you please continue praying for a miracle since we know God can do anything, but we also pray for peace and trust in Him with whatever He wills.”
The family broke the news to Francis’ two sisters Bella, 5, and Maxine, 2, that they would soon have a little brother in heaven. During a special visit to the hospital, Bella was granted her wish to hold her tiny brother.
With Holy Week on the horizon, Kara and John agreed to alternate holding vigil at Francis’ bedside. On Holy Thursday, John washed his son’s tiny feet. The nurses began weaning Francis off the antiseizure medicine, which was keeping him sedated.
“The doctors warned us not to expect much, but instead he started to wake up. His eyes opened. He was looking directly at people,” said John.
On Friday, Kara arrived and witnessed the same improvements that were surprising the doctors. The plan had been to take him off the ventilator and say a final goodbye on Saturday, but the family and doctors agreed to give Francis more time. On Easter Sunday, the Lilly family attended Mass together. Their traditional Easter egg hunt after church was suddenly interrupted by a phone call from Francis’ doctor.
“She shared with us that Francis was doing so much better than she ever expected after his sedation and that it was one of the most remarkable things she’s seen in her career,” said John. “She believed Francis was ready to extubate.”
Surrounded by their medical team, the couple watched in amazement as the ventilator was removed and Francis began to breathe on his own. With time and therapy, he learned to swallow on his own and has been able to do some breastfeeding and bottle feeding. Although EKGs still detected subclinical seizures, the doctors did not advocate putting him back on the medication or monitors because of the progress he was making.
The following days and weeks were filled with a new sense of hope. They also asked for prayers for another baby in the NICU, Thomas Cox.
“They have been praying through Thomas Vander Woude, a father who courageously sacrificed his life for his son,” said Kara. “We have been praying to him to save Francis since we heard Thomas’ story.”
After 60 days in the hospital, Francis “graduated” from the NICU and arrived home May 31.
The family asks for continued prayers as Francis is at high risk for cerebral palsy.
“This is really in God’s hands,” said John. “There is no reason why Francis is making this recovery. We are just trusting in God, and yes, he may have some problems when he is older, but we are just loving him in the moment. We are praying that God will give us grace for each moment.”
Kassock is a freelance writer in Fredericksburg.
