Lilah Grace Shnurman only lived for about nine days outside the womb, but they were miraculous days that her parents didn’t think she would have. At 13 weeks gestation, baby Lilah was diagnosed with a large encephalocele on the back of her head. This cyst formed when the neural tube failed to close properly at the base of the skull. Doctors offered zero hope that the baby girl would survive, but her parents – Sampson and Jess Shnurman – chose to allow their baby to live out her time on earth for as long as she was meant to.
“Sampson and I have chosen to continue on with the pregnancy until the baby’s time on this earth is up,” Jess Shnurman wrote on the family’s Caring Bridge page. “We are not sure whether the baby will live to be full-term or if God will call the baby home sooner. Sampson and I are heartbroken but at the same time we are proud and know that we are strong enough to get through this with everyone’s love and support.”
As baby Lilah continued to grow, her brain grew out into the cavity of the cyst that had been full of fluid. There was nothing doctors could do to prevent it. Doctors originally told the Shnurmans that Lilah might die in utero or survive to full-term but die within hours of her birth. At the 18 week ultrasound, a high-risk doctor told the couple that Lilah was otherwise healthy and because she was safe in the nourishing environment of her mother’s womb, she was more likely to be born full-term. This news was a comfort to the couple who had been worrying that they could lose the baby at any moment. It also meant that, upon her natural death, Lilah could potentially be an organ donor.
“I know we have all been hoping that somehow this encephalocele wouldn’t/won’t actually cause the baby to die but I think this is the best news we could hope for at this point,” wrote Jess Shnurman. “This made my heart so happy and has lit a little fire in me. We have something to look forward to, to hope for, and pray for.”
“So please pray for us, that this little baby girl can possibly donate organs and save lives! I very strongly feel that this is a blessing from God and he does have a plan for all of us!”
Lilah was born on August 29, 2018, and to the joy of her family, did not pass away shortly after birth as they had thought she would. In fact, they were all able to go home together as a family with big brother Abel. She rode home in her daddy’s truck and spent her life being covered in kisses, hugs, and lots of snuggling. She experienced the sun on her face and the breeze on her skin and was deeply loved by everyone who knew her.
“She made a quick, smooth, and healthy delivery,” wrote her mother. “She is amazingly strong and beautiful! All of the prayers have been answered, God has given us a miracle! God has allowed us so much time, love, and kisses. Today we were able to bring her home with us, something we never expected! […] we will hold tight to each moment she is still with us and praise God when he takes her home.”
Lilah died on September 7, 2018, after over a week outside the womb in which she knew nothing but love. Because she was born weighing over six pounds and met other requirements for organ donation, her heart valves were able to save another life.
“At times, I have felt it hard to be sad because of how much joy and love she gave us and continues to give us through her memories,” wrote Jess Shnurman. “Our celebration of her life was perfect in giving others a peek into our sadness, but most of all joy and love. We were blessed with about 9 days with her. Every little thing she did from crying to simply opening her eyes filled our hearts with love.”