Tuesday, October 1, 2013

Anna's Prognosis

To say the words "Thank you" seem cheap and offensive. Because how could I ever begin to say "thank you" to each and every person who said a prayer, sent a gift, or sent positive thoughts to our sweet Anna over the last 2 weeks. I am still shocked at how far her story reached, and how many prayers were said for this sweet little baby, even people who have never met her. It's something that makes me cry everytime I think about it, because I truly believe you all are the ones who saved her life. The doctors performed the procedure, but your thoughts and prayers carried her through to the other side.

We've gotten a few questions on Anna's prognosis and so I wanted to write a brief summary on what we know.

* The official diagnosis for Anna's condition was a very rare form of benign macrocephaly. Rare in the sense that there have only been a handful of published studies about it. How did we get so lucky? Ugh.

* Essentially, other children with benign macrocephaly are fine. They have excess fluid on the outside of their brain, but eventually as their brain grows it catches up to their skull growth. These children can drain fluid on their own and it's not a problem.

* For sweet Anna, she was not born with this condition, but instead presented with accelerated head growth from 2 months onward. Her head circumference went up by 3.5 inches in two months! This is another reason why it's so rare, since most children with benign macrocephaly are born with large noggins where Anna was not.

* So to cure this rare condition, they had to perform a rare shunt procedure. 99.99% of the time, a shunt is placed inside the brain to drain excess fluid inside the brain. But in Anna's case, the shunt is between her skull and brain, so it's on the outside. Which is why, until she grows hair, you can actually see the valve that was placed on the side of her head. It's a crazy reminder of the miraculous procedure they performed to help save my daughter.

* Some people read "fluid on the brain" and asked if Anna had hydrocephaly, and thankfully this is NOT the cause, as hydrocephaly can be associated with a whole other slew of medical conditions. Though a shunt is also used to drain excess fluid with kids with hydrocephaly, these shunts are actually placed inside the brain, whereas Anna's is out.

Everyone follow? That was ALOT of medical jargon.

The amazing news??? Anna is going to be FINE. Despite having two strokes. Despite having a tube in her skull. Despite vomiting for 4 weeks and having a missed diagnosis, the Chief Neurosurgeon told us that Anna will grow up just like every other child. No long-term implications or negative side effects. This will not harm her development, mentally or physically. The worst part of recovery is the bandages on her head and belly, which come off tomorrow. Though she'll follow up with the neurosurgeon often for the next year, after a year it will be as if this nightmare never happened. She can play sports, go through metal detectors, and just be a regular girl with one hell of a story of survival.

So thank you. Thank you all from the bottom of our hearts.

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  1. SO HAPPY!! she's gonna do great and she is so lucky to have such an awesome mama to fight for her love to you guys xoox

  2. Wonderful news!! So sorry for all you guys have been through. What a beautiful girl!

  3. I'm so happy to hear that she is going to be okay. I have been thinking of you all and I'm glad to see that it's all going to be over soon!

  4. aw audra so happy to hear she's ok! ! great news!

  5. So glad to hear she is going to be ok! I had my mom's church prayer group add her to their list, they will be so happy to hear this update. I will continue to pray for you guys, I know this hasn't been easy. If you guys need anything, even a sitter for a few hours please let me know! (hugs)

  6. Just found your blog!
    So glad I came across! I am now following you via gfc & bloglovin!
    Looking forward to keeping up!!


  7. Very Happy to hear Anna is doing great. She is very lucky to have such a wonderful and very strong mom and family.

  8. Yay Anna!! So happy to hear that there are no long term implications

  9. My goodness, I only just "met" you and anna, and you just about made me cry. I cannot begin to imagine how scared you must have been. And what a strong little girl! Such an ordeal for only 4 months. Wow wow wow. Thank god she's okay. And that you are such an awesome mom.