Spina bifida awareness month is October. I did a weekly series on Instagram and wanted it to have a spot on the blog as well. I hope you find this informative and helpful. Please know I am always here for support and questions. 🤗
Hi friends! October is spina bifida awareness month and it’s also the month last year we received our diagnosis. Many, like ourselves before Bryn, know next to nothing about this condition. Every week in October I’d like to share a bit of info about spina bifida to increase awareness. Spina bifida occurs very early on in pregnancy, usually before you have a positive pregnancy test. It occurs when some of the bones in the spine do not close properly around the spinal cord, thus affecting the function of the nerves coming from the spinal cord. More research is needed to determine the exact cause of spina bifida but as I’ve been told numerous times, there is nothing I did that caused her diagnosis. One thing you can do to potentially help prevent it (which I did not know) is to talk to your doctor about taking a vitamin high in folic acid throughout your child bearing years. More next week!
Spina bifida awareness week 2! There are four types of spina bifida. Bryn’s type is called Myelomeningocele and is considered the most severe. After diagnosis through a blood test and confirmation on ultrasound, we were given three treatment options – termination, fetal surgery, and spinal closure surgery after birth. Surgery is not a cure, but is necessary to correct the defect and both surgical options are good treatments. After meeting with many specialists, we obviously decided on the fetal surgery route. With Bryn’s type of spina bifida, the brain is pulled down from the increased tension on the spinal cord. This causes hydrocephalus (excess fluid in the brain) and hindbrain herniation which can lead to cognitive disabilities. The main proven benefit of doing surgery in utero is to correct these things and hopefully avoid the need for shunt placement in the brain. Although there are many complications that come with fetal surgery, we feel strongly that Bryn has benefited enormously from it.
Spina bifida awareness week 3! There are three main specialties people with spina bifida are followed by throughout their lives – orthopedics, urology, and neurosurgery. Orthopedics helps with common problems that arise as a result of spina bifida, such as club foot, vertical talus, and hip dysplasia. They, along with physical therapy, have helped Bryn correct some of these issues so that she will have an easier road as she hopefully learns to walk. Urology helps with bladder and bowel management, as these nerves are low on the spine and are almost always affected. They are helping to keep Bryn’s kidneys and digestive tract healthy as she grows. Neurosurgery watches the brain for hydrocephalus symptoms, shunt problems (around 80% of those with spina bifida rely on shunts), and they also evaluate the spinal cord for increased issues as the child grows. So far, Bryn has not had any neuro related issues and we are thankful for that every day! 💗
It’s the last week of spina bifida awareness month and today is also our diagnosis day anniversary. Looking back on this day brings back a lot of emotions, but we are going to choose to focus on the very bright future Bryn has and the absolute joy she has brought us. Spina bifida is often referred to as a “snowflake condition” because no two individuals with it are exactly the same or experience the same symptoms, even if their lesion is at the same spot on the spine. Because of this, we don’t know exactly what the future holds for Bryn. While we have taken on some interventions, she is overall a healthy, happy, beautiful baby girl and we would not change a thing about her. She has already taught us and those around her so much about what is truly important in life. We look forward to growing with her and celebrating all of her achievements in the years to come! Thank you for following along during spina bifida awareness month and showing so much support and love for our little pumpkin! 🎃🧡