Our baby. The reason for Breathe for PCD.
Within hours after birth, our perfect baby was sent to the NICU for pulmonary hypertension. Once we settled in to the NICU nightmare, in our hearts and minds we believed that, once we got through this hell, the worry and pain would be over. We were wrong.
At one month old, our baby was diagnosed with PCD. Strangely, we are one of the lucky ones. Most people do not find out until years later, after permanent damage has been done. Besides the horror of the news that our baby had a lifelong, progressive disease, we soon were faced with the fact that there is no research on how best to treat our baby.
Our daily regimen for preventative treatment is extremely time consuming and disruptive. But effective.
When he is healthy, our preventative measures include two breathing treatments a day. (Pre-pandemic) Now that he is in school full-time he has to be up at 6:00 in the morning to fit in his treatment before school. His breathing treatments consist of an inhaler to open the airways, followed by 20 minutes strapped into a vest that vibrates and shakes loose the mucus to be coughed up. He also nebulizes a sodium chloride mixture to loosen the mucus and make the vest more effective. From day one, he has had a wet junky cough. This is normal for people with PCD. We call him the Master Mucus Mover to encourage and applaud his coughing and spitting, as this is an integral part to keeping him healthy. We were told that eventually his lungs will be colonized by bacteria resistant to drugs. This happened unusually early in his case. At age two, we were already unable to eradicate an infection called pseudomonas. We were instructed to try to suppress the infection with an inhaled antibiotic every other month...indefinitely. After several years of this, we were able to eradicate the pseudomonas. Many adults with PCD live with partial lung function and eventually require lung transplants.
My baby with PCD got dealt a shitty card. Being that this is a genetic disorder, however, if he was not born with PCD, he would have been a different human. I could not have dreamed up a more perfect baby. Already he has revealed himself to us. Radiant. Determined. Adventurous.
This is a battle that we will fight with him. The generosity and support of friends, family, and empathetic strangers, helps us to breathe easier.
Approximately 1,500 people, in the US alone, have been DIAGNOSED with PCD. However it is believed that around 25,000 people live with it. This is why awareness and research is so crucial and could lead to earlier diagnoses and beginning preventative treatments sooner to prevent permanent, long term lung damage.