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The Newly Diagnosed Video
We found out that Ellie was going to have Cystic Fibrosis when I was pregnant.
The genetic counselors were great. They, they set us up with appointments to meet the CF team of doctors that we would be dealing with once she was born.
They were so… kind and so comforting and really giving you so much of the positive aspects and… and just answering all your questions, making you feel like you're just in some really safe competent hands.
I'd say that was the first glimpse of the hope we were going to have.
When my cousins were born kids weren't living into their past their teens. So when we walked in and they were saying, "You know the life expectancy is into the 30's" that's a huge leap.
I feel like I am relaxing into it a lot more. It was I was very you know just wanted to keep her in a bubble, wanted to keep everybody away from her, nobody was allowed to come in to our house who had you know so much as a headache hahaa. I was a complete germaphobe.
It's realizing that it's just you know something that she has to deal with that it's not all of who she is… that's been, you know a big part of it, I think.
I didn't know she be able to you know run around and look like every other child her age. I figured she would be hooked up to nebulizers and vests and iv antibiotics you know those are… those are things you know can can happen down the road and you just kind of assume that that's kind of gonna be your life. You know you are going to be the nurse and she's going to be the patient.
The doctors had said that not having her in a daycare situation would be optimal. We were also living in a house that was really old and very shaded with a lot of big trees, lot of possible health hazards for her so we found a new house that… was newer construction and had a lot of sunlight to it you know a few other recommendations that the that the doctors would had said would help.
I was very I felt very isolated. I had a toddler at the time and I didn't want to take her out into public and I think I went through a period of depression with that. I would say the biggest support was my family.
I have to say… sometimes I don't know how I got through it. It was… it was just very lonely.
I learned that … she's my child and that's how I need to treat her and CF is just part of her life instead of all encompassing and that you know that it's not Nurse and patient it's mother and child relationship that I want.
The Newly Diagnosed: One Family's Story
The diagnosis created one of life's flashbulb moments for Laura and her husband, an event suspended in time and place by its significance. In 2002, Laura's second pregnancy, and her family's life, changed with the result of an amniocentesis.
Laura's story is as unique – and common — as are all stories that tell the tale of grief and fear following a CF diagnosis. Yet it is also a story of the kind of hope, that many families touched by cystic fibrosis find once they understand the medicine and the magic of living with this disease.
A reason for hope
Childhood memories haunted Laura following the discovery that her second child would be born with cystic fibrosis.
"I had two cousins with CF," says the 36–year–old former physical therapist. "My cousin at 13 had a double lung transplant. I knew about treatments. I think it was even scarier knowing what it meant."
She and her husband, Don, would soon learn, however, that medical advancements in the last 30 years have deeply altered the landscape for people living with this inherited condition.
In the 1930s, the median survival age for CF patients was less than six months. In 1970, that number had climbed to 12 years. Thanks to advances in medicine, and a better understanding of how to treat cystic fibrosis patients, the median survival age is now nearly 37 years old. In the last four years alone, that number has increased more than five years.
"Year–in and year–out we're seeing an improvement in quality and quantity of life," says Janine Cassidy, a registered nurse with the CF pediatric clinic at Children's Hospital in Seattle, Wash. "I'm very hopeful for a cure one day. Doctors are optimizing the health of people with cystic fibrosis so that when the cure does come, those patients are ready."
The cystic fibrosis clinic: A family's lifeline
That's why, following diagnosis at any age, CF physicians immediately bring families into the clinic and introduce patients and parents to their new health care team.
"Education is one of the biggest things we do to help families cope around the time of diagnosis," says Cassidy. "That is one of the reasons we bring them in so frequently when they are first diagnosed, not only to check on the medical status of the child, but also to dispel misinformation and answer any questions they have."
By the time Laura and Don were pregnant with their second child, the medical community had become much more proactive with genetic testing. Since Laura had a family history of the disease, her ob–gyn strongly encouraged Don be tested.
"Don came back positive and it was a terrible blow. He has a huge family and it's nowhere in his family," says Laura, whose first child, Jack, does not have CF. The results of the ensuing amniocenteses showed that their unborn baby carried both parent's gene mutations. The couple arrived at the pediatric CF clinic stunned and distraught.
"Finding out early turned out to be a blessing," admits Laura. "We planned, read about it, and got ready. We moved to a better house that she would be healthier in, implemented a clean–air system, and had enzymes on hand and appointments set up by the time she arrived."
Physicians, nurses, social workers, physical therapists and dietitians all helped prepare the couple for how best to care for their daughter after she was born.
"On the first visit, parents probably spend three to four hours with us discussing their concerns," says Cassidy. "Some people are just devastated because they think their child is not going to grow up and play soccer and I tell them, 'Of course your child is going to play soccer and do normal, childhood things!'"
That news flooded Laura and her husband with guarded hope. Just like most parents discovering one of their children has cystic fibrosis, concern over the loss of a "normal" life was huge.
"I never imagined that Ellie would go to school," grins Laura, who enrolled Ellie, now 4 years old, in pre–school this year. "I remember talking to the social worker and he said, 'Home schooling is fine, but don't home school her because she has cystic fibrosis. Quality of life is just as important as quantity.'"
Banishing fear and isolation
Establishing a solid support network can be key to successful coping with the impact of cystic fibrosis. Family, friends and your health care team can help chase away fear and isolation during the weeks after diagnosis.
Laura barely remembers those early weeks following Ellie's delivery, but recalls that she was "neurotic" about protecting her baby from potential infection.
"You're a germ freak; new mothers are anyway," she chuckles. "People want to come over and see the baby, but it's scary. You feel like every person is going to send your baby to the hospital. As much as you want to show her off, you don't want anybody around."
Cassidy tries to help families regulate those fears by talking to others who understand. "We hook parents up with other families who have gone through it. A kind of 'I've been there, done that,' to show them that there is life at the end of the tunnel."
Cystic fibrosis comes in all shapes and sizes, calling for individualized treatment plans for each child. Every family responds differently to those treatment needs. Laura and Don developed a fairly conservative health care lifestyle, in the hopes of extending Ellie's lifespan as much as possible. It didn't, however, come without a price.
"I was afraid to have our family visit. Nobody brought any kids over," remembers Laura. "I didn't have any sitters come; I didn't want anyone else doing her treatments. We were home all the time with a toddler and a new baby – 24/7."
Before long, depression had snaked its way into Laura's life.
"I wasn't feeling like myself and so I went to see my midwife," she says. "She started asking me some questions and I burst into tears."
Laura began anti–depressants and hired someone to come in and give her a break every once in a while. Both helped tremendously, and Laura soon discovered that she didn't need to isolate her family in order to keep Ellie — now a spirited little 4 year old – healthy and receiving good care.
Looking Ahead
The discovery that your child has cystic fibrosis can happen at any age. Some families, like Laura's, find out before birth. Others, especially in states that require newborn screening for CF, find out in the first week or two following birth. Some children receive the diagnosis following years of health problems.
Regardless of when your family is given the news, it is always a life–changing event. The good news is that in the 21st century, your child will benefit from unbelievably swift medical advancements that are now giving all children with CF a future unheard of just 10 short years ago. At this rate, many researchers believe that anything is possible.
