On September 14, 2005 my son, Dylan Cruz, died of a contagious, vaccine-preventable disease that he caught from me. We had pertussis. He was only 17 days old.
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 casually 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. I was eventually tested for pertussis and was found to be positive. At the same time I was having a hard time keeping Dylan awake during feeding – the only symptom of pertussis he ever had. (Babies can have deceptively mild symptoms – unlike the frightening “whoop” older kids get — but their condition can worsen rapidly.)
Less than 24 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.
If only my pertussis had been found earlier, I could have been treated with antibiotics, and Dylan would not have become sick.
I knew I had received a pertussis vaccine as a child. But I didn’t know that immunity to the disease can fade after several years. This is why adults should get booster shots (Tdap vaccine), although this wasn’t yet available at the time Dylan was born. This is especially true for all the adults in the household, as 85% of infant pertussis comes from household contacts. And newborns make up the highest death rates – it takes just one breath to infect them!
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. There are doctors who believe adults don’t get pertussis, so they don’t recognize the symptoms.
The only thing that could have saved him was preventing him from catching it!
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.