15 years ago God blessed us with twins, Turtlegirl and Supergirl. They were born 6 weeks early and life became a roller coaster ride. Supergirl is the firstborn twin. She appeared quite healthy and nice and pink at her birth. Turtlegirl, on the other hand, was very sick, and was transported immediately to the Intensive Care Unit and received a breathing tube.
That night I was terrified of losing my baby. Little did I know that she would be the child I would worry about least through the years. She was moved to the regular preemie ICU about two days after birth. Just around the time that we received the devastating news that Supergirl had a life threatening complicated heart defect syndrome known as Hypoplastic Left Heart Syndrome. Bottom line: her left ventricle was too small to pump oxygen rich blood to her body. You can read some of her story over at Through the Eyes of Child. That blog is sorely neglected but does share some of what we went through then.
I’d like to fast forward to NOW. 5 trips to the OR for her heart (all between August 1997 and May 2000) multiple trips to the cath lab, a vascular surgery, eye surgeries (both eyes) and more ekgs, echos and blood draws than I count. We have an amazing little (yes, she’s 15 but she is little in size!) girl. But the heart wasn’t the only obstacle. When she was 6 weeks old, the genetics team confirmed that she was missing genetic material on the 11.2 band of the q of arm of the 11 chromosome. 22q11.2 micro deletion. That’s the medical term that is most accurate but it has names such as DiGeorge Syndrome or Velo-Cardio-Facial-Syndrome or even Catch 22.
She also had an MRI done at age 6 weeks. It took until she was 14 months old to get a neurologist to correctly read it for what it was: Strokes. Multiple Strokes and they occurred before she was born. It did not take a train medical professional to tell me that something was terribly wrong with my daughter’s brain. The right hemisphere was completely atrophied. She was functioning on half a brain as well as half a heart.
What does that all that mean? And why am I putting this on THIS blog instead of the blog I have dedicated to Supergirl? Well I write reviews for The Schoolhouse Review Crew. I want a blog post that I can link to that gives some background on my daughter and her unique skills and weakness so that when I review a product I can direct readers to some background and not have to type it up all the time.
At age 15, Supergirl is not typical at all. She isn’t a 15 year old who does teen things but has some learning disability that causes her to be academically years behind her peers. No, the combination of DiGeorge, Stroke and HLHS has caused her mental, cognitive, social, emotional, and physical delays. Though she has made amazing and incredible milestones, she is mentally very much a young child. Her size, abilities and mental age all place her around a 1st grade level. Yes some skills are lower and some are more advanced but calling her a first grader for educational purposes (and Sunday School :D ) works really well.
I often refer to Supergirl as my 1st grader. I hope this page helps you to understand why.