Friday, January 13, 2012

Raising a child who wasn't supposed to survive

I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amanda!


Great interview Esmirna and Amanda seem lovely! Oh and I totally agree with you Amanda wanted your attention.

Do I understand correctly that a newborn who was not dying or suffering was given morphine and sent home with it, without the parents' request for such care?

I wonder if her predicted disabilities were related to this and what the implications are.

To: Anonymous:
Just to clarify, Amanda's condition was in no way caused by the morphine at the hospital. Trisomy 18 is a genetic condition, in our case, hers is Full Trisomy so it was not a inherited trait, just a unfortunate error during cell division. As my wife mentioned, she was administered morphine because she was not expected to live as what the medical fields statistics say. So they were trying to comfort her until she would pass away.

Eric, Amanda's dad.

I admire your courage. My daughter is a very special needs child with multiple health issues, and then some, and she is our world. She has tought both, my husband and I, patience and the real meaning of love. She has passed over a few times in her short life and without saying, we are so blessed that our miracle of love is still with us. Never give up!