Our Journey with Spina Bifida (FAQs and Facts)

Did you know, Spina Bifida is actually an umbrella term to define different neural tube defects?! Crazy huh?! So, no two Spina Bifida patients are actually alike, because they all have different "types" and the lesion or affected area is actually different on every person! 

Due to the fact that this month is Spina Bifida Awareness month, I will address a lot of the questions we get asked about Mia and tackle some myths about this birth defect. 

*This post was updated January 2019 because some medical diagnoses changed*

Our Journey with Spina Bifida (FAQs)

Mia looks so healthy! How does Spina Bifida Affect Mia? 

Just because Mia has this birth defect, it doesn't mean she is "sick" all the time! She is actually quite "healthy". She is more susceptible to allergies and UTI's and those are our main problems. I will explain the latter in questions below.  

Instead of Spina Bifida, let's call it by what Mia actually has: 

Myelomeningocele (pronounced my-e-lo-MENING-o-seal). Basically, before birth, (around 8 weeks of gestation) the baby's backbone, spinal cord and the structure they float in (spinal canal) did not close normally. A myelomeningocele is the most serious form of Spina Bifida. It also causes the baby to have a lot of fluid in the brain called, Hydrocephalus. (For more information click here)

I did it in black and white so people can stomach the image. But if you can't feel free to scroll down. 

In Mia's case, she was born with a sack. This sack had her spinal cord floating around in spinal cerebral fluid. The doctors had to dissect it, take the spinal cord out and put it in place, then stretch the muscles, and skin over it so she would be able to lay flat on her back without causing a major infection. This surgery was done the day after she was born and is now all healed up! 

Her lesion, or affected area is in the L4-S2 region. Which means, the bottom part of the spine. She has some weakness from the knees down, but a few months after turning two and a half, she started walking!

haha! Her cute face!! 

She also has nerve damage that affects her bladder (called, Neurogenic Bladder) and her bowels. So we have to straight catheter her. You've seen me post about me having to "cath" Mia in the morning or if we hang out in person you've heard me say things like, "I have to go! Gotta go cath Mia."  A lot of you are probably like,

Yeah, I know. I'm probably using it wrong. HECK probably all SB parents use it wrong. But it's easier than saying "I have to straight catheter her" every time!

What do you mean by that? How long will you have to do it for?

We currently cath Mia every day every 3 hours. This makes it more likely for her to get a UTI. Last time she was hospitalized in 2018 was due to a pretty nasty kidney infection. And it just comes on. We try to do it super clean, but the catheter introduces bacteria regardless. 

To cath Mia we need: The catheter, swabsticks (to disinfect the area)
and lubricant, to put on the catheter so it can go in easily.
Then, we insert the catheter in the urethra and empty the pee out in a sample cup or diaper (not pictured). 

Does it hurt her?
According to what the doctors have said, and how she acts, she can't feel it because she doesn't have feeling there. It doesn't bother her one bit. Except when she has a UTI, then it bothers her when I press on her bladder.

This is how she's going to learn to potty train! So, she might not be potty trained for a while.

As for her bowels: She also has neurogenic bowels, which means, the whole process of emptying for a b.m is quite difficult for her body. As of the summer of 2018, we started her on something called, The Enema Program. I will go into more detail on another post that I will tag here. 

She will always have bladder and bowel incontinence.


Finally, myelomeningocele caused her to have a Chiari II malformation.

Normal Brain (I got this from the Internet by the way)

Mia's last MRI scan

A Chirari II malformation means that the cerebellum part of the brain, got sucked in to the spinal cord during gestation when the spinal cord didn't finish forming. In other words, she has some part of her brain in the spinal cord.
This causes problems when the shunt isn't working, and pressure builds up in her brain, it squeezes the malformation more into her spinal cord, causing muscle weakness or loss of movement in the upper body. She has dysphagia and hypotonia due to this malformation.

In conclusion, hydrocephalus and the neurogenic bladder is what causes most of the "health issues" and hospital stays. If we don't treat the hydrocephalus, she gets brain damage. If we don't take care of the cathing, she gets kidney damage. The "extra" things we do for Mia are so that she can have the best quality of life possible.

2. Well, did you take Folic Acid while you were pregnant?
A lot of people asked me this question when I was pregnant with Mia and they learned she had Spina Bifida. Some still ask me now.
Let me tell you what my doctor told me, "It IS NOT your fault!" It hurts when people tell me how I "could've prevented" it. Trust me, I couldn't.
I took folic acid religiously, but I was also really sick during my first trimester. Turns out, doctors don't even really know why people are born with Spina Bifida. They think it might be for these reasons. But since it's not in my husband's family or mine, and I always took my folic acid, then it was just how it was meant to be.
Mia is perfect in every way! It's not something we need to point fingers at and assign "blame" to. It's just the life she was given and we are going to make the best out of it.
So, if you ever meet someone who is expecting a baby with Spina Bifida, hug them, be kind, and don't look for a culprit. Then, tell them to contact me because I'd love to become friends with them.

3. Will her brain get better and nerve damage "heal" as she grows?
Nope. There's no cure. There's no special pill to make it "go away". She will have it for the rest of her life and it will affect her differently as she grows. However, she can grow up and have quite a normal life!
Isn't that great?!

That's it!
Three major questions with a lot of information!

I'm so grateful for modern medicine! Her chances of living and succeeding in life have grown exponentially because of it.
If you have any more questions, please feel free to ask. Hope I was able to tackle some myths and answer your questions.

If you want to learn more you can visit:
http://spinabifidaassociation.org/
or
join the group: Redifining Spina Bifida on Facebook, it truly gives a new outlook and it has given me a lot of hope.

Please feel free to share this post so we can raise awareness about Spina Bifida.

Thank you for reading and praying, for us and Mia! We really appreciate it!

JUST. KEEP. SWIMMING

*The alarm goes off

It's 5:00 am on a weekday. I don't want to get up. I don't want to leave the comfort of my warm bed. 

I'm 15 years old and my ride is here. Groggily I put on my pants over my swimsuit, a coat, and I head out the door to meet my friends out in the car. 

Less than five minutes later we get to the pool. 

It's 5:15 am and it's time for practice. Gotta take off the towel and stretch. The coach is talking now telling us what our warm up is going to be. 

Okay. I have to jump in now. But I don't want to. I know the water will be cold. I'm still sleepy, I'm still warm. I don't want to jump in and be cold! 

I close my eyes. *SPLASH*

Eeek! It's cold! "It's okay", I tell myself "just keep swimming". The more I swim, the better I feel. I do a flip turn. One more lap and I can feel it's getting easier. Easier to breathe, easier to stretch my body, easier to move faster. Suddenly, I loose myself in the water. I feel like I'm gliding and honestly being woken up at 5 in the morning is not so bad now. 
My body tells me, "this is good for me! Keep going!" 

It's the end of the work out. My body worked hard. I'm wide awake now and I love how my body feels as I cool down. I feel stronger. 
I feel ready to conquer the day. 

----

It's 1:00 am now on a rainy Monday. More than 10 years have passed since my swim team days. My motherly worries now keep me awake.
I see my baby girl snuggled warm in her pack and play. I know that in about 30 hours, she must go in for surgery.

But she's only a baby! Babies shouldn't have to get surgeries. Surgeries are for when you're older and you've used your body more. Not for when your body is brand new!

As the clock keeps ticking, I can feel it approaching.

-I don't want to jump in! I don't want to be cold!-

I look at her peaceful frame asleep in her bed and can feel her say, "It's okay mom. We can do this! We have done it twice before, we can do it again!" 

"This is good for my body."

I tell myself to keep going. Eventually, it will get easier to breathe. As time goes by my brain will stretch with knowledge and understanding. My heart, though it aches at times, will continue to grow with love and patience. I will be able to learn faster and loose myself in the care of my daughter so she can have THE BEST chance at a good quality of life. Then, spina bifida won't feel so bad anymore.
Just. Keep. Swimming.


---
In my head it's post-op and my baby is in her hospital crib. I know she's sedated and still asleep. In an attempt to comfort her as she starts to wake up, I put my finger in her little hand. She moves a little and gives me a sleepy smile,

"See mom? It all worked out. I feel stronger now. I am now ready to conquer life"

*Sigh*

I love my baby girl. We can do this! We WILL kick spina bifida's butt!

Mia's 1st month

My baby girl is 1 month today! I can't believe how fast  time has gone by. It seems like it was just yesterday that I found out she had spina bifida. I was 20 weeks pregnant. At 22 weeks we went to the specialist and he did an ultrasound. Mia has shown us since then how much of a fighter she is. There she was kicking and moving around like crazy. I told the doctor, "she'll walk right?". He said, " we're optimistic but we won't know for sure until after her surgery when we close the spine". He then have us different options, we could have the spinal closure surgery while she was still in the womb but there were too many risks involved with her and with me. He then said that we could also terminate the pregnancy. I couldn't even believe he gave us that as an option. I know he was just doing his job as a doctor but it hurt so bad. I felt so much guilt from her diagnosis and that just made it worse. Also the thought that somebody might not want a baby like mine made me so sad. The following weeks were full of worry, uncertainty, miracles, and eventually peace.
Mia was born in the University of Utah hospital, conveniently next door to primary children's, where she could receive all the care she needed. She almost came early at 32 weeks but we were able to keep her in until week 37 when she made a speedy entrance into the world. We hadn't been in the hospital 30 minutes and she was already born! I didn't even have time to have an epidural and when she came out I felt like she was so close I could touch her. I remember I noticed right away she had curly hair. She was beautiful. They quickly took her away and I saw the lesion on her back. It was bigger than I thought it'd be. The guilt I felt at my 22 week appointment came back and I started to cry. They wheeled me out and I couldn't hold her close and welcome her into the world how I wanted to.

Mia's type of Spina Bifida- Myelomeningocele

  At 7lbs 3oz and 19 inches long, her lungs were strong enough for surgery. She went through surgery the next day and was such a trooper. Amidst the worry, there were so many people praying for her and our family, I could feel so much peace and that she was going to be okay. Bret kept us sane during her time at the NICU. He would smile at us and give us hugs. I'm so glad he's Mia's older brother and my baby boy. When the doctors came to assess her after her surgery they said the words I've been wanting to hear for 20+weeks, "She'll walk. Her ankles are a bit weak and she might need braces, but she'll walk". I was so happy. I could tell another miracle had been granted. Mia continued to show her strength as she would almost crawl out of her crib with those strong legs due to the prolonged time on her belly. She endured another surgery for the hydrocephalus that developed and is now home with us.

She got a shunt put in for the hydrocephalus. She has two incisions in her head and one on her belly.

She has gone through so much in this month and I am so glad she is here with us. I can't imagine having it another way. She has other nerve damage in her organs and we'll have to keep a close eye on her, but I could have never given that up. We only have to straight catheter her twice a day! She is beautiful, strong, smart, and oh so brave.
Right now Mia loves to hear mommy's voice and daddy's voice! (I think she loves how deep it is). She loves it when Bret's around ( and let's face it, who doesn't). She loves, " be still my soul " and Adele and Katy Perry (but only at 2am). She's a great eater. She drinks 4oz every feeding. She'll be able to turn on her back sometime next month. So far she's doing a great job at healing from her back. She finally got all her stitches out last week!
So here's to Mia Grace's first month of life. Her name is still a great reminder to me that the Lord's grace is sufficient. I'm so grateful for all the people that pray for her and our family. Most of all I am grateful for my Savior Jesus Christ who conquered death. I am grateful for his atonement and the healing it brings into my life. During a weak moment of mine, I questioned why Mia hadn't been healed. Heath and I prayed for it, other prayed that she would be completely healed before being born. I asked Heath one day  if maybe I hadn't had enough faith and that's why she wasn't healed. He thought about this for the rest of the day and then he said, "Lizzie, I think it takes as much faith to be healed as it does to not be healed". I have thought about those words since then and I know it's true. Sometimes the Lord knows why He gives us the trials He gives us and I know He doesn't leave us alone while we're going through them. I know that my redeemer lives. And it is truly comforting.
Happy Easter everyone.

We had Mia's blessing today. I'm so grateful for our families.

I'm glad my sister was able to be here for the blessing and that my dad, baby sister and brother-in-law joined through Skype.

Bret had fun at his great-grandma's house Easter egg hunt.

I love my sweet, curious, happy baby boy.