Baby who lived just 9 days saves another through organ donation

Baby Lilah’s parents were told that her birth defect was incompatible with life, but they chose to carry her to term so that she could save the life of someone else.

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A grief-stricken couple whose daughter lived for just nine days say they are proud that her tiny organs were able to help save the life of another baby.

Jessica and Sampson Shnurman were heartbroken when an ultrasound at 13-weeks showed their unborn child had a large fluid filled cyst at the top of her spine.

Doctors told the couple their daughter, Lilah, was incompatible with life as the birth defect was preventing her brain stem from developing as it should.

Jessica, 30, a surgical nurse, and Sampson, 31, a contractor, continued the pregnancy to term but asked doctors if Lilah might be a suitable candidate for organ donation.

The parents, who also have a son, Abel, aged 2, welcomed 6 lbs., 5-oz. baby Lilah on August 29, and say seeing her open her eyes and cry was the most precious moment.

They didn’t expect her to be born alive and said they feel blessed that they were able to take her home, where she lived for nine days.

Lilah passed away in her mother’s arms on September 7, but the valves of her tiny heart were donated through the Iowa Donors Network to help another baby.

The infant’s lungs were also donated to medical research at the University of Iowa and her parents say they feel privileged that their special daughter’s legacy will live on.

They were able to bring Lilah home, where she lived for 9 days.

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"My husband and I talked about our options and it just didn’t feel right to terminate," Jessica Shnurman, of Cumming, Iowa, said. "We wanted to let God make the decision. As soon as Lilah arrived they put her into my arms and she opened her eyes and cried."

"It was so special because we weren’t sure if she would be born alive," she said. "We spent the whole first day with our family and friends and she was passed from person to person for cuddles."

"My husband brought Abel in right away because we didn’t know how long we would have with her," she said. "He immediately wanted to hold her and was kissing all over her."

"In part of my planning I came across a group called Now I Lay Me Down to Sleep and I called them. They sent us a wonderful lady who came and took our pictures together as a family," she said. "We really weren’t prepared for Lilah to live for long after she was born, but when the next day came they said we could go home."

"We weren’t at all prepared, we didn’t have a car seat or clothes but the ladies at the neonatal hospice were angels and really helped us out," she said. "It was amazing. She opened her eyes and cried. She could hear our voices because she would turn her head, and she squeezed our fingers. I was so grateful for those days. We had nine days at home with Lilah. She died on Sept 7, at 4:07 a.m. in my arms."

"When Lilah opened her eyes and cried, it was a moment I will always remember," Sampson Shnurman said. "It was so nice to go home and get out of the hospital. We were able to feel what it would be like to be a family of four and that was very special."

Soon after Lilah passed away at home, the couple called the Iowa Donor Network, who they had already been in contact with.

"Lilah was able to donate her heart’s valves to help another child, and her lungs were donated as well," Jessica Shnurman said. "We feel incredibly blessed that Lilah has the opportunity to live on through someone else. Lilah was able to give something so precious to another family."

Two days after Lilah’s precious donation, Jessica, Sampson and 2-year-old Abel marked her life with a funeral.

"She’s buried in a small country cemetery near our home," Jessica said. "My husband made her casket himself and my grandma made the lining. A family member gave her a little quilt and it was the most beautiful day outside. My little boy asks about Lilah every day."

Sampson said that the couple would love to one day meet the recipient of Lilah’s valves, whose identity they do not know per protocol.

"Someday we would love to hear their story. That would mean so much to us," he said. 

"We would love to connect with them," Jessica added. "To know Lilah saved someone’s life has been such a comfort to us."

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