Lilah’s story
Lilah Wren was born in Greenville, SC on November 5th, 2023. Weighing 5 pounds, 6 ounces, and a head full of curly brown hair. Despite a very healthy and normal pregnancy, to our complete shock, our Lilah girl was born in critical condition. She was unable to breathe on her own.
Lilah was immediately transported to the NICU at Greenville Memorial. Just when we were settling in for a several-month stay in the NICU while she recovered, her doctors discovered that we were facing very different circumstances. The latest tests led them to tell us the words that no parent ever wants to hear, “Your daughter’s condition is not compatible with life.” Despite the medical literature, her doctors believed that there may be a chance that an operation could save our girl but that she would need to be transferred to receive the highest amount of care. Lilah was urgently life-flighted to MUSC in Charleston where she received the most incredible care and love, while her medical team worked diligently to determine if there were any life-saving measures available for her.
During this period of waiting, and to our complete surprise, thanks to social media, Lilah’s story had reached hundreds of people far and wide. This was our first indication that Lilah was going to change many lives for God’s kingdom. Our friends, family, and many strangers to us, were flooding heaven with their prayers asking the Lord for a miracle on behalf of our Lilah Wren.
Upon further testing after arriving at MUSC, the doctors confirmed that Lilah had an extremely rare and lethal congenital anomaly called tracheal atresia, meaning that during the first few weeks of development her airway never completely formed which obstructed her ability to breathe from the start of life. There was no surgical option available for our girl. Lilah’s condition was so rare that less than 1 in 50,000 babies will experience it. There have been less than 200 cases reported worldwide since 1900. Current research suggests that the underlying cause of her condition is completely unknown and it can occur sporadically in families. Prenatal ultrasound technology can not detect the absence or underdevelopment of the trachea. Despite some extra amniotic fluid detected during a routine 36-week appointment, Lilah’s pregnancy was completely uncomplicated. Doctors reassured us that some mamas just make extra amniotic fluid and it was nothing to worry about, as Lilah was scoring “perfect” on all of her BPP ultrasounds in the last few days of pregnancy. Therefore, we arrived at the hospital in labor with excited anticipation, and fully expected we would soon bring home our beautiful baby girl. We were completely blindsided by the complex medical journey and devastating loss that was ahead of us.
Due to the extreme rarity in nature of her condition, every medical professional we worked with, expressed to us that they had either never seen a patient with the anatomy that Lilah had, or had seen it one time in their 30+ year careers. Our girl was one in a million, and the Lord would soon continue to reveal that to us in many different ways. Doctors expressed to us that Lilah should not have even made it out of the delivery room alive. The medical team should not have been able to intubate her at birth with how severe her condition was. Babies born with the same condition only live a few minutes after birth. All the while we were praying for the Lord to perform a miracle and allow there to be an operation that could save her life, He had already given us her miracle- 5 days of life. MUSC doctors were in complete shock that Lilah gave us 5 days. Every doctor or surgeon we talked to was completely in awe and called Lilah’s case an absolute MIRACLE! 5 days spent being constantly prayed over, sung over, and loved on by her family and big sister. While it was not the miracle we were praying for, those 5 days gave us time to love on her and show every medical professional that we serve a God of the impossible.
On November 10th, 2023, we along with the incredible medical professionals who quickly became like family to us, surrounded our daughter with the most worship-filled hospital room as we had to allow them to extubate our precious girl and send her to be welcomed by Jesus. We were left completely devastated leaving the hospital with empty arms and broken hearts beyond belief.
BUT GOD. . .
Lilah’s story was not over, in fact, it was just getting started. Little did we know, Lilah and Jesus were up to something big. The next morning before leaving Charleston, Gavin insisted that the Lord put on his heart to go back to the hospital and pray over each of the babies in the NICU. As Gavin was on his face before the Lord in the hospital waiting room, our Father in Heaven gave him an incredible supernatural vision. The Lord very clearly revealed to him that Lilah was never ours to begin with. We were vessels used to bring her to this earth for her story to allow people to come to know Jesus. He showed Gavin Lilah’s resilient fighting spirit flowing through the three hospitals we visited, specifically in the NICU at MUSC.
Since that dark night in November, the Lord has used Lilah’s story to do exactly as he showed Gavin He would. Through our 5-pound 6-ounce baby girl, the Lord has and continues to show the world the incredible hope we have in Him. The name of Jesus has been shared in places that normally reject Him, communities coming together, relationships restored and redeemed, and lives changed for eternity, all because of Jesus using our Lilah Wren. As we have continued to worship despite our broken hearts and continued to share her testimony, Lilah’s story has reached hundreds of people bringing them closer to Jesus, some for the very first time.
Lilah’s story reminds us all that we serve a sovereign God who does not waste one ounce of our pain. We serve a God who works all things for good, even when it does not look or feel like our idea of good. We serve a God of miracles.
