Clara has no known diagnosis, but she has something wrong with just about every system in her body.It is truly humbling to watch her fight for everything so many of us take for granted. It instantly puts things into perspective
Clara Josephine Schablein is a beautiful 13 year old girl, born November 1st 2002. She lives with her Mom, Nora, Dad, Mike, older brothers Sam and Ryan and younger sister Hope.
Clara has no known diagnosis, but she has something wrong with just about every system in her body. Clara is non-verbal, non-ambulatory , wheelchair bound, g-tube fed, has a trach in order to breathe, severe curvature of the spine, intractable seizure disorder, visual impairment, and heart defects, just to name a few of her issues.She is 100% dependent on others for every aspect of her life.
Clara’s journey through life began with a normal, healthy pregnancy, very much like my previous two pregnancies. No abnormalities were detected in ANY of the routine tests and ultrasounds, and we prepared for a healthy baby girl.
On her due date, a routine ultrasound detected heart defects and we were rushed to the hospital for labor induction. She was born 8 hours later and was taken to Cincinnati Children’s Hospital Medical Center Cardiac Intensive Care Unit. She had open heart surgery to repair some of the defects when she was 10 days old. Her repair didn’t hold, so she had two more procedures to dilate her aorta open.
To this day we watch her heart closely, but it has remained stable. Thinking the heart was her only defect, we waited in the hospital for her to heal and get stronger.
But she didn’t, and it wasn’t apparent why. We spent from November 1st, 2002 until March 13th, 2003, in the hospital, Mom or Dad staying every minute with her. (we would tag team it, switching off being at home with our two boys and being with Clara.)
During our stay it became apparent, through many test and procedures, that her heart defect was just the tip of the iceberg. We discovered that she has: Microcephaly -small brain/doesn’t grow Pachygyria-impairment of development of cerebral Cortex, which is responsible for Conscious movement or thought Laryngomalacia- floppy larynx, airway obstruction Silent Aspiration- food goes into lungs, no Coughing to alert to problem G-tube - placed at 3 months for total nutrition needs. She gets nothing by mouth. Chronic lung disease due to aspiration-Visual impairements- Bilateral coloboma of the Optic nerve and Cortical Vision Cerebral palsy , low tone and spasticity.
We finally brought her home on oxygen, monitors, and suction machine, and began a life of meds, physical therapy, occupational therapy, and speech therapy. Seizures began at 6 month of age and quickly became her biggest issue. She has several different types of seizures, but the tonic-clonic (grand mal) were very frequent, often requiring rescue meds and resuscitation. Her trach was placed when she was five years old and has helped dramatically with her recovery after a seizure.
Clara currently sees 10 specialists at Children’s Hospital in order to manage her care. She is frequently in the hospital, usually due to pneumonia. There are constantly new problems developing, the newest being kidney stones, that we add to our list.
Life with Clara is a challenge, no doubt about it, but she has given us and taught us so much more than we could have ever imagined. She has the most gentle spirit, so accepting of the life she has been given to live and all the pain that comes with it. It is truly humbling to watch her fight for everything so many of us take for granted. It instantly puts things into perspective. We may never know why Clara’s body formed as it did, perhaps the geneticists will discover the answer someday. But I do know that we are honored to have the privilege to be her family and go on this journey with her. We love her more than words can say!