Spina Bifida

Surprise, we are expecting a baby girl this April! We are beyond excited to be growing our family. This past holiday season has been extra special as we look forward to the many memories ahead with our little one. Despite Winston’s concerned face, we promise he is equally excited to become a big bro… well we at least hope!

The title of this post probably seems a bit odd for a pregnancy announcement. During our 20-week ultrasound, we unexpectedly learned that our little girl has Spina Bifida (myelomeningocele). Considering most, ourselves included, do not know much about Spina Bifida, we decided it would be easiest to explain what that means for our family in this post. Please note that the information below is based on our personal conversations with doctors and specialists; we are by no means medical experts.

Spina Bifida (myelomeningocele) is a neural tube defect that develops within the first 28 days of pregnancy. There is no known cause, prevention, or way to predict if a child is likely to develop the defect. When developing, the spinal cord starts as a flat sheet, rolls into the neural tube, and closes from the middle up and the middle down. Myelomeningocele occurs when the spinal cord stops closing down at any given point, creating an opening of the spine where nerves are exposed and stop developing. While about every 1 in 2,700 babies are born with Spina Bifida, it looks different for every single child and is considered a “snowflake condition”.

The defect can cause a variety of lifelong needs including difficulty walking/mobility, bladder incontinence, enlarged ventricles in the brain, which can cause hydrocephalus, and Chiari II malformation. Since every child is different and the defect can occur anywhere along the spine, no two Spina Bifida patients have the same lifelong needs. Traditional treatment starts with surgery within the first 48 hours of birth to close the opening in the spine and prevent further nerve damage. Fetal surgery (in utero) to close the opening has also become more widely available since the Management of Myelomeningocele Study (MOMS) was published in 2017. As children grow and a variety of mobility or bladder issues arise, there are multiple options for treatment. If the ventricles in the brain do enlarge enough to cause hydrocephalus, then a shunt is the most common way to redirect excess spinal fluid.

After a month of consultations with specialists, multiple MRIs and ultrasounds, and tests we have learned a few things about our little girl’s Spina Bifida. Her defect is located very low on the spine, specifically the S1 region, she currently has strong movement in her hips, knees, and ankles and they are straight, her ventricles are borderline normal to large, and she has a Chiari II malformation. In our eyes, she is absolutely perfect, and we are thankful that in medical terms she is otherwise completely healthy. Through our many consultations with specialists in both Dallas and Houston, we have discussed both traditional post-natal surgery and pre-natal fetal surgery, as well as the wide variety of surgeries and needs that we might come across in the future.

We have decided that the best decision for our family is to close the opening in her spine with post-natal surgery. This decision was agonized over and based on hundreds of factors and data. The rest of our pregnancy will look very normal with just a few more ultrasounds, which we are always happy about seeing more of our girl. Birth will include a scheduled c-section to eliminate stress on her, followed by surgery on her spine within 24 hours. We will have about a two-week stay in the NICU to let her surgery wound heal fully before heading home. After repair, her doctors will keep a close eye on a few things, but otherwise, she will be like any other baby. The specific impacts of Spina Bifida on mobility, the bladder, and the brain will become clear over years and we will be addressing them on a day-by-day basis.

We are thankful for so many things through this experience. First and foremost we are grateful for her life, which we never once questioned nor have viewed as any less. Spina Bifida is a part of God’s plan written for her and we are confident that whatever comes her way is for his reason. We are also incredibly grateful for the love, support, and prayers of family and friends; we are truly surrounded by the best people. Finally, we are thankful for the means and access to top specialists, doctors, and surgeons right here in Dallas, and realize that is, unfortunately, a privilege many do not have. We cannot wait for the great joy she will bring us! xoxo Taylor and Alex