Baby Kennedy Morton - Open Spina Bifida Surgery

In December 2022, we were overjoyed to share the news with our family and friends that Emma was pregnant with our second child, a baby girl that we named Kennedy Hazel.  In early February,  Emma went to her prenatal appointment, which included genetic bloodwork testing, one specifically for Spina Bifida which came back as abnormal.  Our worst fears were confirmed a few weeks later at a maternal fetal medicine specialist appointment, confirming that Kennedy has open spina bifida, in the most severe form known as Myleoschisis.

Myleoschisis occurs when the spinal cord protrudes without the layer of skin covering the opening of the spine and the surrounding nerve tissue is exposed to the amniotic fluid. This condition comes with the unknown as it relates to Kennedy's future walking ability, potential swelling of the brain (which can impede  development of the brain), and bladder and bowel function.

This news broke our hearts, tested our faith, and created fears of the unknown for Kennedy's future.  Despite this uncertainty, we also felt hope.  We came to learn that while there is no cure for spina bifida, fetal surgery is available for early intervention and treatment.  Fetal surgery can reduce the need to divert fluid from the brain, improve mobility, and improves the chances for a child to walk independently.  Our maternal fetal medicine specialist referred us to three different specialists across the United States: Miami, Philadelphia and Texas.

After multiple phone consultations, we learned that our only option was to pursue treatment and fetal spina bifida surgery with a fetal therapy specialist based out of Miami.  A procedure in Florida allows us to have the support of our local family and we can continue to care for Kennedy’s 16-month-old big brother, Brody. Our specialist, is internationally known for his work and has performed more than 1000 fetal surgeries.  In fact, he has created a less-invasive approach to the spina bifida surgery that minimizes risk to both mom and baby.  However, this particular surgery is still in a clinical trial phase and our insurance carrier does not cover this particular surgery. 

Once we met to talk over Kennedy's condition extensively with the specialist,  he then performed another ultrasound looking at Kennedy's defect which showed little brain swelling, no distention of her bladder and bowel.  We were even able to see Kennedy flexing her legs and wiggling her toes.  Our specialist was encouraged by these factors and we were filled with hope.   We knew God was moving mountains for us and providing the steps to move forward with surgery.  

Due to this particular surgery still being in a clinical trial phase,  we still had a long checklist to complete before Emma and Kennedy could be considered candidates for surgery,  an amniocentesis was required to confirm Kennedy had no other genetic conditions and we were blessed to find out she “passed.”  Other appointments were then scheduled in the beginning of March back down in Miami which included a Fetal MRI, Pediatric Neurosurgeon Consult, a Fetal Echo, Pediatric Cardiologist Consult, and a Social Work Consult.  All of the subsequent reports from these appointments were then sent back to our specialist for review and confirmation of candidacy for surgery.  

Finally, on March 31, we received confirmation that we could move forward with surgery on April 21 (previously scheduled for April 18).  While we are thrilled to have this opportunity, we are still faced with the reality that our insurance carrier will not pay for the surgery.  If you feel moved to donate to our out-of-pocket costs, we would be grateful for any support you can offer.

More importantly, though, we welcome your prayers for our family, and our sweet baby girl, as we prepare for surgery.   

Thank you, 

David, Emma, Brody and Kennedy Morton