Super Riley

A TinySuperhero’s story from a Super Mom’s perspective:

“I was told that Riley would be one of two things when she was born: brain dead or very delayed. Riley is 1 year old and just recently ranked at a 2 year old cognitive level.

When I was 19 weeks pregnant, they noticed a lesion on Riley’s back. That’s where it all began. Super Riley has had one back closure (myelomeningocele repair) at 15 hours old, a shunt placement at 7 days old, a shunt extraction at 3 months old due to an infection, a new shunt placement a few days after, and an ankle tendon release surgery at 8 months old. Five surgeries total in less than one year. Her diagnoses include spina bifida, hydrocephalus, hip dysplasia, and clubfoot.

It’s like Riley knew she’s was going into surgery every single time. The reason I say that is because while I was a nervous wreck, she was extra cuddly and happy on those days, like she was trying to tell me ‘don’t worry mommy & daddy I’ll be ok.’ Pain wasn’t a part of Riley’s agenda; she would come out of surgery like it never happened. A few hours after she would be back to her normal self, smiling and laughing.

One of our scariest moments we have had was when Riley was almost 3 months old. I remember waking up to a scream like no other. A scream only a parent would know that something wasn’t right. I remember telling my husband that we needed to rush her to the hospital, because in my heart I felt like it may have been her shunt. She showed no other symptoms that it could have been a malfunction, but I had to go with my mommy gut. She was so sensitive to the touch. Any time we would move her, she would scream as if someone was hurting her. When we got to a local hospital they told me it was just gas, but I refused to take that as an answer. I told them to contact our primary hospital, CHOP, where they then decided to fly her out to them. What was thought to be gas pains actually ended up being a shunt infection. She then had to undergo two separate brain surgeries at 3 months old. When your child hurts, it’s one of the scariest feelings, but when your child is hurting and the doctors can’t even figure out what’s going on, it really puts a sense a fear upon you. My advice is to always listen to that gut feeling, you know your child best.

Riley Nicole means victorious and lion-hearted, and that’s exactly what she is. She’s defeated odds, she’s proven to so many to not give up, and she reminds many what it truly means to love. Riley doesn’t know it yet, but she’s a world changer. Ever since I’ve shared her story on social media, we have encountered some amazing people, some who were thinking of abortion and some who were going through a similar situation. Riley’s journey has put a sense of peace to many hearts. Many babies were given a chance to live because they saw that doctors aren’t always right. With dedication, and love you can get your little one through anything. Riley has her struggles, but she doesn’t let them define her. Despite all that she’s been through, she is such a happy baby. She reminds me daily to enjoy life.

Riley has very weak leg muscles and paralyzed feet so standing and walking doesn’t come easy, but with lots of therapy and practice, I know she’ll eventually get it. Plus, one of Riley favorite pastimes is to sing and dance. Anything and everything becomes a microphone.

We will hopefully be getting a walker soon to better assist her motor skills. We are not sure if she will need anymore surgeries, since it’s more of a waiting game to see how her internal and external body develops. Spina Bifida is a snowflake disability, meaning no one case is the same, so we have to wait and see what’s next.

She’s changed my world. Despite of all she’s been through she is such a happy baby. She reminds me daily to enjoy life.”

Super Riley has already empowered 35 other TinySuperheroes by sponsoring their capes, and she is still going! That is INCREDIBLE! Super Riley and Super Mom Crystal, you and your army are going to do amazing things, especially as you grow. The TinySuperheroes Squad is so proud of you, we love you, and we cannot thank you enough for making such a positive impact in our community.  

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *