Midway through their pregnancy, Meredith and Joe Barnes of Champaign, Illinois received devastating news. At 18 weeks gestation, their daughter was diagnosed with a severe form of Spina Bifida known as myelomeningocele. With this condition, the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. A majority of babies with myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, causing pressure inside of the head to increase and the skull bones to expand to a larger than normal size.
In the midst of their anguish, Meredith and Joe found hope at the Fetal Care Center.
“On June 2, we sat down in a conference room to meet Makenna’s Dream Team at the Fetal Care Center,” says Meredith Barnes, Makenna’s mom. “We needed hope more than anything. The dream team that we met was amazingly caring, understanding and wonderful.”
That ‘dream team’ included specialists from maternal fetal medicine, neurosurgery, newborn medicine and the coordinator for the spina bifida clinic. They followed Makenna’s progress closely throughout Meredith’s pregnancy and prepared the family for Makenna’s future.
“We left the meeting with a new found hope that everything would be OK and Makenna would be an awesome little kid and not just a diagnosis,” says Joe, Makenna’s dad.
The ‘dream team’ was ready when Makenna entered the world on September 4 at Barnes-Jewish Hospital. Baby Makenna was greeted by a team of specialists and immediately transported via connected walkways to the St. Louis Children’s Hospital newborn intensive care unit (NICU) for evaluation and surgery.
At two days of age, Makenna had surgery to close her back defect. Just a week later, she had a ventricle peritoneal shunt (also called VP shunt) placed to drain excess fluid from around the brain in order to reduce pressure.
By day 11, Makenna was able to leave the NICU and head home with mom and dad.
Today, at 9 months, Makenna is a bubbly, energetic little girl. “She’s an amazing little kid with a ton of spunk!” describes Meredith. She continues to be cared for through the Spina Bifida Clinic at St. Louis Children’s Hospital by specialists from neurosurgery, orthopedics, and urology.
To the ‘dream team’ that started the journey with Makenna before birth, Meredith and Joe have a simple message. “We personally cannot thank you all enough for the HOPE you provided for our family and continue to do in her journey!”