Kristen Cook is now my friend, but before that, she was my patient. We met when she was pregnant with her third child, Hannah. Kristen had prenatal testing for chromosomal abnormalities, which are more common in moms over the age of 35. When Kristin found out that her baby had Trisomy 18, otherwise known as Edwards syndrome, she and her husband Jason were overwhelmed. They wondered what the impact of Trisomy 18 would be on her baby. Can a baby with Trisomy 18 survive? Is Trisomy 18 always fatal?
“The results have come back. We need to tell you that your baby has Trisomy 18.”
She had so many questions! How accurate is the Trisomy 18 blood test and what is the survival rate of Edwards syndrome? Can Trisomy 18 be prevented? Do Trisomy 18 babies suffer? She had never even heard of this genetic disorder until her baby was diagnosed.
She immediately ran to Google to find Trisomy 18 pictures, success stories, Trisomy 18 life expectancy, and support from other moms with related genetic disorders like Trisomy 13 and Trisomy 21.
Kristin’s journey from mom of two and engineer to fighter, mom of three, and now nurse was tumultuous, to say the least.
Trisomy 18 is a life-limiting diagnosis. Babies with this condition frequently are stillborn in the second or third trimester. When they are delivered at term, they generally don’t live for very long. They may have major birth defects, low birth weight, and poor feeding. Kristen and her husband Jason knew that their time with Hannah would be limited, and they were determined to make the most of that time.
So we had to work as a team, making a series of decisions that would increase the chance that Hannah would survive to delivery. We did procedures and testing that we would not typically offer to a family with Trisomy 18. For instance, we performed ultrasounds for growth and looked at blood flow through the umbilical cord, with a plan to deliver early if she got into trouble.
If you are pregnant and are being offered genetic testing or have been recently told your baby has a chromosomal abnormality, then this video is here to give you help and hope. Here is the first part of Kristin’s story, her journey from diagnosis to creating a care team, to developing the best path to delivery.
Although this condition is rare, you can feel confident knowing that with the right team supporting you, you can give your child the best life possible, regardless of the ultimate outcome. Hannah’s life was brief, but Kristen and Jason have the peace of knowing that Hannah was loved and cared for to the best of their ability.
Watch today’s part one episode about Trisomy 18.