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 from Cumming, Iowa, 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.
Heartbreaking: Jessica and Sampson Shnurman, pictured with their son Abel, from Cummings, Iowa, gave birth to a daughter who had a large cyst on her spine
Adorable: It was unclear how long Lilah would live once she was born, but she survived for nine days and was able to go home with her family
The parents, who also have a son, Abel, aged two, welcomed 6lb 5oz baby Lilah on August 29 and say seeing her open her eyes and cry was the most precious moment.
They didn’t expect the tot to be born alive and said they feel blessed that they were able to take her home, where she lived for nine days.
‘It was so special because we weren’t sure if she would be born alive,’ Jessica said
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.
Jessica said: ‘My husband and I talked about our options and it just didn’t feel right to terminate.
‘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.
‘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.
‘He immediately wanted to hold her and was kissing all over her.’
Together: The family found out about Lilah’s birth defect during her week 13 ultrasound but decided not to terminate the pregnancy
Miracle: The couple didn’t expect for LIlah to live, but when she was born she was able to open her eyes and cry
Sweet: Abel held Lilah right after she was born and overwhelmed the baby with kisses
Surprising: Jessica said she and her husband were shocked when the nurses said they could take Lilah home for a few days
She continued: ‘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.
‘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.
‘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 4.07am in my arms.’
Sampson added: ‘When Lilah opened her eyes and cried, it was a moment I will always remember.
‘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.
Heart-wrenching: ‘She could hear our voices because she would turn her head, and she squeezed our fingers,’ Jessica said
Sad: On the ninth day of being home, Lilah died in her mother’s arms. They decided to donate her organs to another baby in need
Incredible: The couple said they felt thankful for the nine days they were able to spend with their daughter before she died
Jessica said: ‘Lilah was able to donate her heart’s valves to help another child, and her lungs were donated as well.
‘We feel incredible blessed that Lilah has the opportunity to live on through someone else.
Sampson added: ‘Lilah was able to give something so precious to another family.’
Two days after Lilah’s precious donation, Jessica, Sampson and two-year-old Abel marked her life with a funeral.
Jessica said: ‘She’s buried in a small country cemetery near our home.
‘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.
Sampson said: ‘Someday we would love to hear their story. That would mean so much to us.’
Jessica added: ‘We would love to connect with them. To know Lilah saved someone’s life has been such a comfort to us.