Kayla’s Story

Kayla’s second daughter Lilah Violet was stillborn on June 19, 2020. Her oldest living daughter, Remy Joelle, is 4 and her rainbow daughter, Eden Livi, was safely born on July 28, 2021.

Kayla’s first pregnancy with her oldest was smooth sailing and uncomplicated. With no signs of problems a routine anatomy scan during her pregnancy with her second daughter Lilah would reveal not only was her cervix dangerously funneled and shortened but her daughter had a very rare birth defect called a giant Omphalocele. Omphaloceles occur in approximately 1/10,000 pregnancies. In Lilah’s case the majority of her liver was protruding into a thin sack outside her abdomen. Amniocentesis indicated her diagnosis was isolated and not tied to a chromosomal abnormality, which is often the case for about 50% of babies with this birth defect. With much hope in their hearts Kayla and her husband continued with Lilah’s pregnancy with hopes Lilah’s Omphalocele could be repaired soon after birth. Many children with Omphaloceles, with the help of modern medicine, go on to lead long, healthy, fulfilling normal lives. Before genetic results were complete, Kayla had an emergent cerclage (cervical stitch) placed just days after her anatomy scan to continue her pregnancy. Unexpectedly, however, after heading in for reduced movement shy of 29 weeks gestation she would come to find out her second daughter Lilah had passed away in utero. It is suspected Lilah’s Omphalocele caused a cord accident cutting off the vital oxygen and nutrients she needed to thrive. She was born silent and still but absolutely perfect. Kayla and her husband loved on Lilah for a full day before having to say goodbye.

Thirteen months after Lilah’s death and a very physically and emotionally challenging pregnancy after loss she and her husband welcomed their third daughter Eden into the world. Oldest sister Remy has been delighted to grow along side a living sibling. Kayla and her family will continue to live their lives apart from Lilah until reunited again someday.

As Kayla continues to find ways to honor her daughter in her every day life she continues to raise awareness for stillbirth and advocate for other bereaved parents who have experienced stillbirth. She hopes to get further involved in supporting bereaved parents locally in the future when her kids are older and more independent.

Kayla would like to offer the following advice for couples who are pregnant or plan to get pregnant following a loss – be sure to find care providers who listen to you, support you, can provide reassurance when your anxiety runs high during PAL and will advocate for your care. Be kind to yourself and take all the space that you need to process the emotions that come with PAL. Don’t ever feel like you owe anyone an explanation for how you grieve, survive PAL, or raise your children.

Kayla would also like to remind society that while you might see happy smiling faces and a perceived happy ending on social media you never know the underlying battles someone is fighting behind the scenes. Always be kind and gentle in situations like PAL. And that a rainbow pregnancy/rainbow baby doesn’t erase all the pain. If you are struggling after loss, trying to conceive, or living through a challenging pregnancy , you are seen, you are heard, and many are praying for you.

Omphalocele stories

Omphalocele stories

Omphalocele stories

Omphalocele stories

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