Warrior Mom; Nancy

Nancy's Story

On August 12, 2009 my son John Anthony was born in Germany due to his dad being stationed there. My entire pregnancy we were told that we were having a perfectly healthy child. At birth we noticed that he did not have a right ear, it was completely shut where his ear should have been, we instantly new something was wrong but never expected how things really were. When he was 2 weeks old his Genetic testing came back and he was diagnosed with Cri du Chat Syndrome which is a very rare syndrome. In November he became very sick with Pneumonia, Doctors both Military and German did not believe that he could survive this Pneumonia and John and I returned to Los Angeles, CA to seek better healthcare and a slight possibility of him surviving. We arrived in CA a week before Christmas 2009. In January I took him to the ER because the Pneumonia returned, he was then transferred to Loma Linda Children's Hospital which was a better equipped hospital. His dad was sent on Emergency Leave to be by his bedside as his future was unknown. John was taken to surgery to correct an obstruction in his airway but the surgery failed and they had to place a tracheostomy for him to be able to breathe, his father had to return to Germany within 12 hours of the surgery while John was still in a coma. On our way to the airport we got a phone call that his condition had worsened and they had to do 2 emergency blood transfusions. At this point John was 5 months and only weighed 5.7lbs so he was a very fragile little boy. A feeding tube was place shortly after. during 2010 John spent about 90% of the time in the hospital.

In September 2010 I became pregnant with our daughter. John's health was worsening again and he was not tolerating his feeds and losing weight very quickly so in January John was hospitalized for his rapid weight loss and spent 3 weeks in the hospital. The day before John was discharged from the hospital his father served me with divorce papers and I was 4 months pregnant. On June 2nd 2011 I went into labor with out daughter, when my water broke they noticed that their was meconium in the water and that her heart rate was decreasing rapidly but thankfully she was born perfectly healthy. On June 19th 2011 John was hospitalized to have his trach removed but 2 days later John suffered 2 strokes. It took them over 15 minutes to resuscitate him. He was put on life support and spent 13 days in a come. When he woke up he was basically a vegetable, he no longer recognized anyone or interacted with us. He went home 3 weeks later but was still not tolerating his feeds. I would have to feed him every hour 24 hours a day. It took over a year for him to remember what he use to do before the stroke. He is now 4 years old and is still not able to sit down, walk, eat by himself, or do anything by himself. I feed him every 2 hours around the clock. He has done things that doctors said he would never do and is still alive after 3 close calls with death. He is my miracle.

Warrior story written by Nancy Martinez in her own words
 

 

For a related story, check out Maria's Story