"It was so beautiful and precious. I would do it again, and again, and again," Julie told Ela Wunderli of Itsy Photography, who photographed the birth of her seventh child, Lily, who would die shortly after birth.
In her 36th week of pregnancy, Julie and her family moved from Arizona to California. Having given birth six times before, Julie was an old pro at this pregnancy thing and was having a happy, normal pregnancy. Mixed into her week of unpacking and settling was a doctor's appointment at her new OB/Gyn practice. "At the appointment they wanted to do an ultrasound where they discovered many concerns," she said. "By the next day the doctors told us that our daughter most likely had Trisomy 13 or 18, but they couldn't be sure until after she was born and tested."
Trisomy is the presence of three chromosomes instead of one. The most commonly known trisomy is Trisomy 21, otherwise known as Down syndrome. Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) are genetic disorders that include health problems that affect almost every organ of the body. They are fatal diagnoses — more than half of babies affected with the conditions do not survive the first week of life, and survivors do not usually make it past their first birthday.
The room was filled with anticipation during the 20 hours of labor. "Everyone held their breath to see if she would survive the delivery," Ela shared. "She held her breath too! But when the doctors tried to intubate her, she let out a tiny cry and started to breathe on her own. It was a miracle!"
Baby Lily was put on a CPAP (a breathing assistance machine) and rushed to the NICU for monitoring. Later that morning, her siblings arrived to visit her. After receiving hand-washing lessons, they filed into the NICU to welcome their baby sister. Each child had an opportunity to touch her and welcome her in their own way, before moving on to Julie's room to spend some time with mom. Later that day, Julie spent some time with Lily in the NICU, and Ela had the opportunity to capture their moments together.
"I couldn't have been happier to have caught her tiny eyes opening — even if it was only for a split second," Ela shared. "She cried a tiny little cry — and I must say it was like music to hear."
Lily lived for two and a half days. During that time her family showered her with love and threw her first and second birthday parties. She passed away peacefully — tube and wire free — in her mother's arms. Her family wrote her a beautiful obituary:
. . . She spent two-and-a-half celestial days with us. We celebrated her first birthday with lilies, handwritten birthday cards from her brothers and sisters, and a big shiny balloon in the shape of a number one. On her second birthday, we gathered round her. We held her. We hugged her and kissed her again and again. We told her how much we loved her, and how we were going to miss her so very much. And we said good-bye. For now.
Though heartbreaking, Ela says the entire two and a half days were beautiful. "I've never seen a mother so radiant and glowing. The faith of this family was beyond measure."
Read on to see the captivating photos Ela took that the family will cherish forever.