Adjusting to Diagnosis

This is a common diagnosis story sent in by a family at our CF Center.

It was a Friday evening at approximately 4:45pm. The telephone rang and I headed to my phone in the kitchen. I answered the phone and the caller on the other end of the line identified herself as the receptionist from my 9-day old newborn’s pediatrician’s office. The receptionist said, “The results from your newborn’s screening just arrived and it is presumptive positive for Cystic Fibrosis, can you please hold?” As I stood holding the phone receiver in my hand, I immediately felt numb and confused. Being a new mom and young, I had no idea of what Cystic Fibrosis is (I was barely able to say it in my head), but knew it did not sound good. After what felt like an eternity had passed, the receptionist came back on the line and said, “The doctor would like to see you on Monday to discuss the results and schedule a test to confirm the results.” An appointment was scheduled for Monday and the phone call ended. I stood there for a moment trying to process what was just told to me. I tried to call the office back to see if the doctor was available so I could ask “What is Cystic Fibrosis?” However, being that it was two minutes until five o’clock on a Friday evening, no one would answer the phone. I quickly glimpsed at my newborn, who was peacefully asleep on the couch. I immediately logged onto my computer, went to a search engine and typed Cystic Fibrosis. I could feel my heart pounding as I waited for the webpage to load. I clicked on the first site that popped up and started reading. My eyes were flying over the words and seeing words like, Life-Threatening, median age, skin salty to taste. The last one caught my eye, “skin salty to taste”. I got up and ran through my apartment to my baby. I licked her forehead only to find that it had a light salt taste; I licked my arm as a comparison. I knew right then that the words on my computer screen were true and did not need a medical test to confirm my thoughts. I began to cry which turned into weeping as I went back to my computer and kept reading. Upon my husband returning home, I was crying so uncontrollably that I was barely able to speak. All I could say between sobs was, “She has Cystic Fibrosis.”

The following week involved driving to the local Cystic Fibrosis Center and having our newborn go through the Sweat Test Screening (click here for more information about this test). We waited at the hospital for the test to be run. As we ate lunch in the hospital cafeteria, I kept looking at my new baby girl thinking she looks okay and that there is nothing wrong with her. Some of the information on the website mentioned problems that some infants have with regaining their birth weight. I knew in the back of my head that since we left the hospital 15 days ago she had no problems regaining her weight. So, I had a small hope that I was worrying too much as I always do and there was nothing wrong after all. We finished lunch and had another short wait before being lead into the exam room. My husband and I sat in the room in silence while our newborn slept in the car carrier. The doctor entered the room with the nurse practitioner and delivered the news that our daughter in fact has Cystic Fibrosis. As the doctor talked and gave general information about Cystic Fibrosis I half-listened. I had so many thoughts running through my head like, “What does this mean? Is she going to die? What do I now?” The doctor handed us prescription after prescription saying, “This is for this, this is for that”. I tried to take notes, but it was all so confusing. I left that appointment feeling scared, confused and sad; but most of all I was determined to learn as much as I could.

You may or may not find similarities in my recollection of how we learned of our daughter’s disease. However, one thing is certain for all of us, we all have a story of how we began on the CF journey. A journey that is constantly changing and unique for each person.

Whether you are the parent (or any relative) of a child newly diagnosed or you yourself have been diagnosed, either situation brings on more questions/concerns than answers. You will go through many mixed emotions and may feel overwhelmed with this diagnosis.

The best advice that I, as a parent of a child with CF, would give to others on this journey would be to take one day at a time. You are NOT going to understand everything overnight. While you are adjusting to the diagnosis, try to get into a “routine” of giving/taking meds ( click here for suggestions) as soon as possible. The sooner you establish a “routine”, the better for the health of your child/self.

As a non-medical person, I would suggest the following:

1. Read, Read, Read – Educate yourself about this disease to best of your ability.
2. Ask Questions – Do not be afraid to ask your CF team any question (hopefully this guide will answer some of your questions).
3. Get Support - Surround yourself with support from others that are going through the same experiences and/or seek assistance from family and friends.

In the end, if you still feel that the diagnosis is too much for you to handle on your own I would recommend seeking professional help.