Spina Bifida Awareness Month + Bryn Updates

Happy October and happy Spina Bifida awareness month! I know there are so many awareness months and weeks out there, it can get overwhelming. I also know that knowledge is power and the more you know, the easier you can understand someone when you learn their story. I am always so deeply touched when someone takes the time to ask questions and understand our story. Most probably think they are being nosy or insensitive when asking questions, but in reality, wanting to know more is an important way of showing you care.

I will be sharing facts about Spina Bifida on my Instagram and Facebook all month long, the same way that I did last year. If you would like to skip the weekly updates and get all of the information now, keep reading! At the end of this post I would love to share an update on how Bryn is doing!

What is Spina Bifida?

Spina Bifida is a neural tube defect, which basically means that the spine does not form correctly in the first few weeks of pregnancy, causing damage to the spinal cord and nerves. It is generally detected through a blood test and/or ultrasound in pregnancy, but sometimes is not diagnosed until after birth. We have always done all of the blood tests in each of our pregnancies and this is how Bryn was initially diagnosed (two years ago this month actually!). From there, we were sent to a high risk OB for ultrasound confirmation, and then on to a Maternal Fetal Medicine specialist and Fetal Surgeon for treatment options and follow up. The cause of Spina Bifida is currently unknown and there is nothing that can be done to 100% prevent it.

How is Spina Bifida Treated?

There are three types of Spina Bifida. Bryn’s type is called Myelomeningocele and is the most severe. After seeing the specialists at Children’s Hospital Colorado, we basically had three options – terminate the pregnancy, have surgery on her spine to close the spinal defect after birth, or pursue fetal surgery to close her spine during pregnancy. Research shows that some of the nerve function can be preserved and the need for intervention in the brain goes down with fetal surgery. So, after undergoing a wide range of testing, we were able to qualify for fetal surgery and Bryn and I were operated on at just 24 weeks pregnant.

What Does Living with Spina Bifida Look Like?

Spina Bifida comes hand in hand with many other diagnoses. Hydrocephalus, the most common, is a buildup of excess fluid on the brain. By doing fetal surgery, we were able to avoid this diagnosis for Bryn. Many people living with Spina Bifida also have impacted bladder and bowel systems. Babies are often born with foot abnormalities, like Bryn was, that require casting or surgeries to correct. In addition, feeding and/or skill delays are common, as is loss of feeling in the lower extremities. Luckily, we are blessed to be able to visit a Spina Bifida clinic at our Children’s hospital every six months to check in with all of these specialists in one day and make sure Bryn is living her best life!

What Does the Future Look Like?

Spina Bifida is considered a snowflake condition, which means that no two individuals experience it the same. This fact is tough because we don’t really know what to expect for Bryn. We also see this fact as a blessing because it means we cannot compare Bryn’s progress to anyone else’s. We can only focus on working towards the absolute best life for Bryn as an individual. Currently, we are very thankful for Bryn’s mobility aids (walker, stander, gait trainer, and wheelchair) that get her moving and exploring the world around her. We will continue to rely on these tools. While we do endure many doctor appointments and an enormous amount of physical therapy, we are unbelievably excited for Bryn’s future and all of the amazing things we know without a doubt she will accomplish!

An Update On Bryn

As always, I’m going to pick and choose what I share in order to protect Bryn’s privacy. Bryn is doing amazing! We have been making some proactive changes in her day to day care to make some things easier on all of us. She had a quick brain MRI at her last Spina Bifida clinic in September and her brain is totally stable – such a big blessing for us. She will have one last quick MRI in March and then we will be able to skip this test unless we see changes in the future.

We started electrical spinal stimulation in July with an amazing PT named Gerti Motavalli in Florida. The basis behind this treatment method is to supplement physical therapy by activating muscles on the lower extremities that Bryn does not have access to because of her nerve damage. In the three months since beginning spinal stim, we have already noticed a significant increase in strength, sensation, and function in Bryn’s legs. She’s been able to access these muscles to roll over, sit herself up, stand much better, and even take a few independent steps with her walker! We definitely see her stubborn toddler side coming out occasionally, which comes with some resistance to PT and letting us know exactly what she does (and does not) want to do. Overall though, she is so interested in walking lately and we can’t wait to see where this interest takes her!

We are forever thankful for her therapists here in Colorado – Lorena at Solshine Therapy and Holly at NAPA center. If you have a kiddo with Spina Bifida and are looking for spinal stim or DMI therapy, I would highly recommend these ladies.

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