The Courage To Go First by Kasey Hilton

Carter VI

So, you’re the first… “Not exactly the words you anticipate hearing at an appointment when it comes to your unborn child, are they?

I was 19 weeks pregnant with my first child when we found out he was diagnosed with Spina Bifida, myelomeningocele, the most severe type. After listening to our options we decided to pursue fetal surgery. After weeks of tests I was a confirmed candidate. I asked, “Is there someone I can talk to who has been through this so I know what to expect?” And then we heard it… “So, you’re the first.”

There are times where you, or your child, may be the first of their kind. It’s scary to think that there is no one to compare or talk to about the things that you are going though and at times you may feel very alone.

However, I realized that it’s not just the doctors, nurses, and staff paving the way, you are too. Taking the chance to be the first, or for your child to be the first, will help to pave the way to help those who come after. You’re the reason programs will become better, you’re the person who has real feedback that can be heard and appreciated, you’re the reason that people want to come to this hospital because you had the courage to trust the team to watch over your child.

After going through fetal surgery, Carter was born at 34 weeks and spent time in the NICU. He was incredibly well taken care of, watched over, and to top it all off, I had the chance to teach people on that floor all about my son! How amazing to take what could have been a terrifying experience and turn it into something others could learn from.

Since our fetal surgery in 2014, Mott has successfully completed this surgery six more times for other children. I am thankful that we were the first because when I hear about these new moms learning what I learned about my own child and the surgery that might take place, instead of them hearing, “So, you’re the first,” they can hear “We have successfully had seven fetal surgeries.”

How amazing is it to be one of those numbers?

Submitted by Kasey Hilton