Saturday, October 15, 2011

Spina Bifida Awareness: Meet Kasey!

Today we meet sweet little Kasey!! here are a few words from her mom, Marie:

My name is Marie and I'm the mother of a beautiful 3 year old daughter who is living with Spina Bifida.

I, like most parents of children with SB, can remember the day I found out about Kasey's Spina Bifida like it was yesterday. I was 18 years old and 32 weeks pregnant. I had my best friends mom with me at my 32 week appointment because I had just switched OB's and wanted her to be there with me so she could see my princess on ultrasound! Even after the ultrasound when the ultrasound tech told me that they wanted me to come back in a few hours- I was not too worried. I thought maybe it was standard procedure for new patients that were as far along as I was. A few hours later though, I was sitting on the exam table bawling my eyes out. I had never heard of Spina Bifida before. My best friends mother drove me home as I just sat in the front passengers seat crying. She had to help me explain to my dad what was going on and that the next day I had an appointment 2 hours away to learn more. Of course, the maternal-fetal specialist gave me the worst case scenario. He told me my princess would be a "vegetable" because of the amount of fluid on her brain and that she wouldn't have much of a life. Thankfully my insurance decided to send me to a different specialist that was even farther away after that appointment. They had me go to Vanderbilt to see the Maternal-Fetal Specialists there. Those specialists were not as doom and gloom! However, I was still worried. I was only 18 and was going to be a single mother. I kept thinking that maybe it was something I had done that caused this although all the doctors kept telling me that it was not my fault in any way.

I was scheduled to have a c-section on August 4, 2008. Of course, even in the womb, Kasey had different plans. The morning of August the 3rd, I went into labor. My water broke and so I hopped in the car with my best friend and we headed out on the 3 hour drive. However, half way there we had to stop at the local ER because my contractions were so close together and they needed to take me by ambulance to Vanderbilt. At 2:15 p.m. on 8/3/08, my beautiful little girl was born. I got to give her a quick kiss on the forehead before she was whisked off to the NICU. I was unable to go see her until the next day when I had recovered better so my father saw Kasey before I did. I still remember him coming back to my hospital room with tears in his eyes and telling me what a beautiful angel she was! Kasey had her back lesion closed the day after she was born and her shunt put in 2 days later. Her lesion was from T11-L2 and her hydrocephalus was pretty severe.

Kasey is now 3 years old. I'm married to a wonderful man that she knows as daddy and until last week, she had only ever had those two surgeries shortly after birth. A few months ago we started noticing some changes. One of her feet started turning in and her legs started getting tighter. Her bladder function started changing and when I discussed it with her urologist he said he wasn't worried because it was for the better (his opinion, not mine but thats a completely different story!). We made an appointment to see Kaseys orthopedic surgeon to find out if there was something going on in her legs causing the changes and his x-rays came back fine. He sent us for an MRI so we could get answers. After the MRI we had to wait a couple weeks to get in with him for an appointment to find out answers. The MRI report said that she had syrinx and a Chiari malformation. We knew she had a Chiari malformation but we did not know about the syrinx. So, we then made an appointment with her neurosurgeon. A few weeks ago we saw him and he said the syrinx was minor, but Kasey did have significant tethered cord. He told us we had to decide whether to operate on it or not. We made the decision to go ahead and have it operated on so that she would not lose more function. Last week, on October 6th, Kasey had her 3rd surgery- a tethered cord release.

 I knew that recovery would be hard. However, I didn't realize how hard it would be for all of us. Keeping a 3 year old flat on either her back or her belly is a challenge. I think the worst part is when she cries because she's uncomfortable. In addition to that, a month ago Kasey became a big sister! Despite all the challenges that Kasey has and will continue to face, I do not think I would change a thing. She teaches me something new each day and I admire her courage and determination. Honestly, she's the strongest person I know! She has touched in some way each and every person she has met. She has changed me and made me a better person. There are days that I do not feel like I am only 22 years old though!

Thank you, Marie for sharing your beautiful little girl with us!!


Jamie said...

She is such a doll!

Kim said...

You have a beautiful family! Thank you so much for sharing your story. :)