Thursday, February 2, 2012

Caroline's Story

As we continue through February and Turner Syndrome awareness month, I thought I would write about Caroline's story.  
Our Turner Syndrome journey started on an April afternoon during a non-scheduled ultrasound at 9 weeks that identified a cystic hygroma (fluid filled sac) on the back of Caroline’s neck.   The next 10 weeks were filled with many appointments and always the same story, your baby only has a 10% chance of making it to term and that is if she isn’t miscarried or stillborn before 24 weeks.  Those weeks were hard, tiring, and just so heartbreaking.
 (This is a shot of Caroline.  Her head is off to the left.  The black part at the arrow is the fluid or cystic hygroma on the back of her neck.)
At 19 weeks, we went in for an amnio only to discover that our prayers had been answered.  Caroline’s cystic hygroma had resolved and we rejoiced.  We declined the amnio and hoped that our daughter just had a slow lymphatic system and not a chromosome abnormality.    As the weeks progressed, we had additional ultrasounds that ruled out kidney and heart issues.  She always measured 2 weeks ahead, so our doctor thought her chances of Turner Syndrome was extremely low.
On November 11th, 2010, I gave birth to a healthy baby girl.  I remember asking (through the tears) if she had Down syndrome, but that was because everyone thought she wouldn’t have TS.  I remember Rodney commenting on her very puffy hands.  Unfortunately, I didn’t do my research, so I had no clue that the puffy hands and feet were a sign of TS. 
The NICU team took Caroline to be evaluated for breathing issues.  The NICU pediatric doctor returned an hour late informing me that she thought Caroline had TS.  Hearing that news was so rough and I just balled.   
We are now 14 months into this journey and it had been full of ups and downs. Her TS complications are relatively few.  She has had ear infections that led to tubes at 10 months.  She was recently diagnosed with an aortic valve stenosis.  She had a kidney infection at 3 weeks that led to a hospital stay, but thankfully has been our only kidney complication. She has Nystagmus (rapid eye movement) that she will have surgery for in the spring. She was diagnosed with hip dysplasia (dislocated left hip) at 4 months and had 8 months of hip treatments in which 3 of those months were in a spica cast. 
Through it all, Caroline has maintained her contagious smile and her zest for life.  She is a spunky little girl that is determined to do things her way and on her own schedule. Turner Syndrome does not define her nor will it limit her, she is her own person and she will do amazing things in her life.

I prayed for this child, and the LORD has granted me what I asked of him.
~ 1 Samuel 1:27

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