Mariah & Dylan's Story
Script of speech given at Press Event on April 28th at Bayview Child Health Center
What happens to those who suffer from challenges in life? Does life gain meaning?
Do people become more compassionate or bitter? Do people reach out to their communities or isolate themselves?
These are all question I asked myself when a life was taken from my family.
On September 14, 2005 my son, Dylan Cruz, died of a contagious, vaccine- preventable disease that he contracted from me. We had pertussis.
I am here today because I don’t want to see any family suffer the way mine has.
In the weeks before Dylan was born, I had a runny nose, low-grade fever and severe cough. My doctor hoped that it would clear before I delivered, but the coughing caused contractions to start two weeks early and Dylan was born on August 28th. He was a healthy, beautiful baby and the easiest delivery a mother could ask for. However, I continued to cough and was short of breath during my post-partum stay. I expressed concerns about going home sick with a newborn and was told to see my primary care doctor by my OBGYN and pediatrician.
Our pediatrician causally mentioned pertussis and despite being a nurse, I did not know much about it. So on the day of discharge, I asked my doctor and was told that pertussis, also known as whooping cough, wasn't seen anymore, that viral infections are going around this time of year and could cause the symptoms I had. So I went home hoping hand washing and breastfeeding would help protect Dylan from getting this “cold”.
Within the next few weeks, I sought second and third opinions about my condition which seemed to be worsening and I was eventually tested for pertussis. At the same time I was having a hard time keeping Dylan awake during feeding - the only symptom of pertussis he ever had. The doctor wanted to get an x-ray of Dylan’s lungs to make sure he didn’t have pneumonia.
Less than twenty-four hours later my baby was unable to breathe on his own, his immune system was failing, and his heart and kidneys were shutting down. Pertussis was quickly taking over his body and there was no medicine to stop it. The very next day, after failed efforts of resuscitation, we watched our sweet baby close his eyes for the last time.
I will never forget holding him in those last moments helpless… powerless…lifeless…
As a critical care nurse for the past 7 years, I felt like I should have done more; I should have known more about this disease. The "what ifs" haunted my every thought.
After meeting with the people from the San Francisco Department of Public Health we realized that we could have possibly spread the disease to others. Family members, friends, and children at our son's preschool were all at risk. They would need to be contacted to prevent the disease from spreading further.
As I moved through the stages of grief, I had to face the realization that no matter how much I did, Dylan wasn't coming back. He was the innocent victim of dangerously low levels of awareness about the fact that pertussis is much more common than the public and even medical providers realize and many times adults spread the disease to children.
The only thing that could have saved him was preventing him from catching it!
Some facts I wish I new before Dylan was born:
- The immunity from pertussis vaccinations received as a child wane after 10-12 years, so many adults no longer have immunity from the disease
- 85% of cases are spread through household contacts
- There is no effective treatment for pertussis, only supportive care
- Newborns are helpless and make up the highest death rates- it takes just one breath to infect them!
Although grief and guilt plague my daily life, I have to forgive myself. I have to remember that I am a good mother and a good nurse. I have slowly found the courage to move on with my life.
As a result of my loss I am currently going back to school at UCSF and studying Health Policy – specifically the barriers that keep people from vaccinating.
Over the past few years people ask how they can help ease our pain.
We simply ask that:
- Parents vaccinate their children in order to protect them from whooping cough and other diseases that affect children.
- All adults should get a Tdap booster vaccination, especially if they spend time around children.
- If you have a persistent cough, get tested for pertussis to prevent the spread of the bacteria.
A vaccine was introduced because there is no effective treatment to stop a disease like pertussis from harming and killing thousands of children. We must all work together to increase the awareness about diseases, like pertussis and measles, that are re-emerging and encourage vaccinations in our community.
I would like to thank everyone who is working for the San Francisco Immunization Coalition on preventing pertussis, for their time, efforts, and passion and a big thank you to each of you for being here today and listening to my story.
With regret and hope,
Mariah Bianchi
San Francisco, CA