Cystic Fibrosis is part of our family now on Earth, but we know that Cystic Fibrosis is not forever, but our family is!
Sunday, April 5, 2015
Meet the Adams Family : The Short Story
13 years ago, those words meant nothing to me. Now they
influence almost every decision I make.
Before We Knew
In 2002, I fell in love with Frank and we got married. Five
years later we were preparing to bring our first baby – a beautiful girl – home
from the hospital. Our doctor noticed an issue with her stomach and she stayed
in the NICU for a week to clear it up. A blood test was taken to rule out a
long list of potential causes for the stomach issue. Bottom of the list and
least likely (according to our doctor) was Cystic Fibrosis. Neither Frank nor I
had any relatives with Cystic Fibrosis, so we didn’t think much of it. However,
when the results came back her diagnosis was indeed CF.
Unknowingly, both Frank and I were carriers of a genetic
mutation called DF508. 1 in 30 Caucasians are carriers of this defect and if
two carriers have children, there’s a 25% chance that their children will have
two copies of this genetic defect and be diagnosed with Cystic Fibrosis.
Initially, we were told our daughter had a terrible disease and
she would die young. However, after working with the angels at Phoenix
Children’s Hospital Cystic Fibrosis Clinic, we learned what CF means and how to
help our daughter not just survive, but grow, learn and thrive.
Learning About Cystic Fibrosis
In its simplest terms, the salt and water in a body with CF
don’t work together like they should. The incompatibility of salt and water in
the cells causes thick mucus to form and coat the organs of the body –
typically the lungs and digestive system. Although a person with Cystic
Fibrosis has a normal immune system, the bacteria that gets stuck in their
lungs when they get sick has a very hard time leaving.
Additionally, people with Cystic Fibrosis are not able to
utilize the natural release of their own enzymes from their pancreas because
the pancreas is blocked by mucus. This requires that they take prescription
enzymes with all food to try to mimic the natural enzymes needed for digestion
and nutrient absorption. If these enzymes are not taken with all food the
result is no digestion, no growth and no weight gain.
Continuing to Live
Despite the difficulties, our daughter’s medical treatments soon
become routine and we were blessed to give her a baby brother two years later.
He had only one copy of DF508 – so he is only a carrier like ourselves. Two
years after his birth, we were expecting our third child, another boy. Prior to
his birth he was diagnosed with CF. Now four years later, we are expecting our fourth
child. A little girl due in June. Baby Ruby has also been diagnosed with CF.
Many people ask how we could continue having children when we
knew there was a 25% chance they could have CF. Why would we not seek adoption
or fostering a child in need. Didn’t we feel guilty?
Yes, feelings of guilt and confusion the past seven years have
at times been overpowering. We have wrestled with what was the right decision.
In the end, adoption was not the right avenue for our family at this time.
Through our darkest times, the overwhelming anxiety about the
trials and struggles our children would face and the crushing guilt as we
expanded our family, Frank and I have tried to focus on three things –hope, our faith and the love we can share
with our children to give them the courage to face every challenge that will
come. We know that Cystic Fibrosis is not forever, but our family is!