Callista an 11 month old little girl with Spina Bifida and Chiari Malformation. I remember when I first even knew about Spina Bifida it was from a picture on the refrigerator of the parents of a friend of the guy I was dating at the time (follow that...anyway) it was from the newspaper article of the very FIRST fetal surgery being done on a baby with Spina Bifida and the baby reached out and grabbed the doctor's finger. Anyone else remember that? Well now that is almost STANDARD practice for these precious little ones!
Here is what little Callista has undergone since the fetal surgery from her mommy:
Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.
At 2 days old, she a shunt placed for hydrocephalus.
At two months old she had a decompression surgery.
At four months old she had a g-tube placed.
At eight months old she had a double hernia repair and a vesicostomy.
She currently has physical and occupational therapy 1-2 times a week.
I've had the joy in celebrating some successes with Callista through her Facebook group and watching her grow and develop. Even though she is delayed compared to most children, she is meeting milestones in her own time and fashion and it is such a joy to see her and her family get so excited about what she is able to accomplish now!
Here is another bit from Callista's mommy about her journey so far:
The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.
We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.
The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).
And here is the precious little princess!!
To follow and support Callista visit the following pages:
To learn more about Spina Bifida you can visit the following website (there are TONS of resources and information out there, but this is one that I liked):