My name is Sharon Lutz. I gave birth to our daughter Kathryn Ann
("Kate")Lutz on St. Patrick's Day, March 17, 2000. She was born with
Goldenhar Syndrome. Her case was extremely bad and rare. The right
side of her face and body was not as developed as the left. She was
born with a single-ventricle heart and only one lung. Her right ear
had malformed, her mouth (inside and out)had malformed. Her right
side of the head and face was deformed. She couldn't eat because she
couldn't suck or swallow. Some of her ribs were malformed. Her
esophogus was all curved and bent. Her heart and liver had shifted
towards the center of her body. Since she didn't have a right lung,
her arteries and and lung and the rest of her pulmonary system was
being stretched and strained. When she was born she was immediately
put on a ventilator and after a couple of days was able to come off
the ventilator. She was definately a fighter. Kate fought her
battle to live in the NICU at Children's Hospital. She had been
poked and prodded and gone through test after test. Strangers
changed her diapers. She was fed through a feeding tube. Her O2
sats kept dropping, her heart rate would drop. If she got upset she
would "crash" and had to have blow-by air to help her breathe and to
raise her O2 sats. When she got really bad the nurses and doctors
had to bag her and use chest compressions to bring Kate back. On
April 6, Kate had to be placed back on the ventilator because she
kept crashing over and over. The doctors said that there was nothing
they or anyone could do for her and that she would just get worse and
worse as time went on and that Kate would never again be able survive
off the ventilator. Even while Kate was on the ventilator, she would
crash. On April 9, 2000, Kate's fight was over and she died
peacefully in her sleep in our arms when we took her off the
ventilator. Our beautiful daughter is gone along with our hopes and
dreams.
The doctors told us that it was a fluke and that there was nothing we
could have done to prevent Goldenhar. When Kate was forming inside
of me (around 3-7 weeks) the doctors thing that she had a blood clot
in her head which caused all the malformations.
We are very thankful for our family and friends and all the wonderful
doctors and nurses and other hospital staff that had helped us
through the pain.
Thank you for taking the time to read this.
Sharon