Serena A.
Massachusetts
Birth Date: January 16, 2001
Diagnosis: Holoprosencephaly
Serena's Story
When I entered my last trimester of pregnancy, we found the baby would be sick. We didn't know the severity for sure, but the doctor's painted a bleak picture. When Serena was born she was with me for seven hours and then was taken to the nursery for a bath. She had a seizure in the nursery and was sent to the NICU. She was hooked up to every tube and machine you can imagine. For the next two weeks they did every test under the sun.
When she was four days old, she stopped breathing in her father's arms. She was put on life support as all CPR efforts had failed. She was on life support for seven days. When she was taken off life support, she kept breathing on her own.
Two days later we got all the test results. She was diagnosed with Holoprosencephaly. She also had epilepsy, diabetes insipidus, and a slew of other things. We were told she would live, but no one knew for how long. I actually found out years later that Serena had a less than three percent chance to live twenty four hours after birth.
They said she would never respond to us, would be completely unaware of everything, would never recognize her name. The doctors were wrong about that. It took a lot of hard work, blood, sweat, and tears but she developed such a personality. She responds to her name, she recognizes us, her grandparents, the home care nurses, and everyone. She has definite likes and dislikes.
She has had in excess of a dozen surgeries. She is tube fed, on oxygen and on a ventilater at night. We literally have all the machines you can find in an ICU in our home. She has been through hell but despite all that she is truly a happy kid. She has a smile for everyone and defines courage. To this day the doctors don't know what to make of her because there is no medical explanation for her still being here. She is my heart and soul, the air that I breathe.
