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At the end of August 2020, Taylor Burris and James Spikes went into their first ultrasound appointment together during the COVID 19 Pandemic. Exhausted from recently moving from Atlanta, Ga. to Kansas City, Ks., both were excited to join hands and see their bundle of joy at this 20 week doctor’s visit. Expecting wonderful news, they were instead quickly met with whispers and concerned faces.
Discovering a hole on their baby’s spine their daughter was diagnosed with the most severe form of Spina Bifida, myelomagenicele. This condition in which the spinal column fails to completely close exposing the spinal cords, was allowing fluid to build up in the baby’s head. The undetermined amount of damage already caused left the couple fearful for the quality of life for their child.
“I was crushed because I thought I had done something wrong to cause this, until Doctors explained that this was a happen chance scenario,” the 25 year old mother stated.
Immediately the Kansas medical system went to work performing a procedure called an amnioscentesis involving a medical professional sticking a large needle through Taylor’s stomach and uterus to reach the amniotic fluid surrounding the fetus.
By agreeing to this process the Spelman and Morehouse graduates discovered that neither had any chromosomal abnormalities or genetic history leading to their child’s condition, leaving the couple puzzled on the source of their daughter's diagnosis.
The Center for Disease Control and Prevention found that Spina Bifida occurs in 2.73 out of every 10,000 live births in the African American community. Moreover Children’s Hospital of Philadelphia reported that “there are more than 4,000 known birth defects, and the causes are largely unknown… Birth defects are the leading cause of death in the first year of life,” making it difficult for the pair to find other first time parents of color to confide in.
“Despite tons of research, looking at videos, and joining online groups we still felt lost and alone in the process,” recalls the duo.
After various blood tests, an ultrasound, MRI and echocardiogram, the young family was directed to Children’s Mercy Hospital where they sat down with a board of doctors headed by Dr. Paul Grabb, Section Chief and Neurosurgeon and Dr. Emanuel Vlastos, Medical Director of Fetal Therapy.
Fortunately for them Dr. Vlastos brought open-fetal surgery from St. Louis to Kansas City in 2017, giving the new parents hope that they can restore their daughter’s spinal defect but not without considerable risk. After hours of discussion with the team of experts and with all options on the table the couple knew they had to give their child a fighting chance at a great quality of life.
October 2020 Taylor and their unborn baby underwent prenatal Spina Bifida surgery resulting in one of the quickest and most successful procedures and recoveries for both patients.
The process required making an incision on the uterus, breaking Taylor’s water, flipping the baby with a sling, and operating on the child’s spine. With several emergency teams ready in the wings, the surgeons put the exposed part of the fetus back into the womb and closed Taylor up, permanently altering her abdomen.
“All of the risk was worth it and hearing our daughter’s heartbeat kept me going. I would do it again for Rose if I had to because we were so confident in our team and we were right to be,” claims Taylor.
The procedure has been perfected by a select few including Vlastos and research has found that tackling Spina Bifida months before birth can better neurological function, improve long term function of the bladder, bowel, and brain and increases ability for the child to walk independently.
After just four days of hospital recovery under intense monitoring the family was discharged from Children's Mercy Hospital in Missouri. While James returned to Georgia to finish his work contract, Taylor returned to Mercy twice every week and was kept under intense monitoring due to the difficulty it takes for the body to heal while the uterus continues to grow.
December 24, Christmas Eve, Rose Spikes was delivered in her amniotic sac during a planned Cesarean Section, a rare occurrence. Despite her diagnosis her spine healed from her previous surgery and she only had a seven day stay in the Neonatal Intensive Care Unit (NICU).
“After various MRIs and assessments from hearing, to vision, to motor, they concluded that our child was in excellent condition” the 25 year old father affirms. Today at almost two months old Rose is growing at a steady rate and the former Georgia residents are pleased to report that their daughter is in perfect condition.
“We still take her to various appointments to track her growth and to make sure there are no drastic changes to the fluid in her head, but she is amazing and is already lifting up and kicking those little legs. We can’t wait for what the future holds.”