Now I Lay Me Down To Sleep - Philadelphia

Hi!  My name is Savannah Grace and this picture of me shouldn’t even exist!

My story is a little long, so let me give you the shortened version, (that includes how I met Desiree’)

At my mommy’s first ultrasound appointment when she was 19 weeks pregnant with me, the doctors gave her very bad news.  They said that I had an  encephalocele. (I’m sure you’re wondering, so I’ll tell you that an encephalocele is a rare disorder in which the bones of the skull do not close completely. This creates a gap through which cerebral spinal fluid, brain tissue and the meninges (the membrane that covers the brain) can protrude into a sac-like formation.)  Mine was very big!  Besides looking to have a lot of brain matter and fluid in it, the doctors told mommy that most of the right side of my brain was in there! The doctors at CHOP said it was actually the largest one they had ever seen. We left our appointment and were  given a less then 10% chance that I would live after birth.

As the weeks grew on and the more ultrasounds we had, the sac was growing with more fluid but it didn’t look like any more brain was in the sac.  The rest of me was growing normally.  About a month before my birthday, the doctor told mommy and daddy that it looked like my brain stem was still intact, so I should come out breathing.  The only thing was, they didn’t know for how long I would breathe but at least they would have a few  minutes with me.  This all made mommy really sad!  She felt me move every day and had hope in the back of her mind that I could be a miracle, all while preparing herself for the reality that I most likely would pass away soon after my birth.

The big day came 3 weeks before my due date.  Mommy and Daddy said that the hospital called Now I Lay Me Down To Sleep so that a photographer would come and take pictures of me so they could cherish them forever.  When the photographer came, she asked mommy and daddy if they wanted her in the Operating Room and they said yes, they just wanted as many photos of me that they could get.  When it came time for my actual birth, I  came out alive and was doing really well in the OR.  The doctors looked at my encephalocele and were still amazed at how large it was.  It was as large as, or maybe a little larger than my head, and it was only held on by a piece of skin at the top of my head.  They wrapped me up into a little bundle and daddy held me next to mommy as they finished her surgery.

My cute toes!

The nice nurses wrapping up my encephalocele so daddy and mommy could hold me

As the day went on, I met my brother and both sets of my grandparents.  I started to nurse, my coloring got better and I never struggled to breathe or keep my body temperature up.  So the next day, mommy really needed some sleep and I was doing awesome, so it was decided to put me in the NICU to see if they could remove the encephalocele!  They did an MRI and saw that it could be removed, and when they did the surgery, the doctor told my parents that there was much less brain in the sac then once thought and that my brain looked “too normal” to have all the damage once thought. I did stay at the hospital for a week or two (I forget, I was too young to remember all the details) and had to have a shunt placed for my hydrocephalus, and a G-tube (which has since been removed since I breastfeed like a champ).

The scar from my surgery

This takes me to today!!  I’m a happy, healthy 4 month old little girl!  I smile, laugh, “talk”.  I receive physical therapy twice a month through early intervention, but really, I don’t need any sort of “care”.  My neurosurgeon saw me yesterday for a check-up and to evaluate my shunt, and guess what?!  My head has grown a little (I used to not even make the charts and now, I’m at 3%) I was so proud of myself.  I also got to meet Desiree on Tuesday, which is how I have these photos.  She has never met a miracle baby she said.  I’m so happy that I’ve proven medical science wrong and so are my parents!!!  Thanks for reading my story and watch for an update next year, Desiree’ said she wants to take my photo yearly <3

I smile all the time!

and Desiree said she loves my 4th of July outfit, actually she loves all my outfits so she changed me 3 times. I was a great sport!