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You could be a carrier of Cystic Fibrosis and not know it. C.F. is an inherited, chronic disease that often leads to coughing, lung infections and pneumonia. The average lifespan of people with C.F. is only around 37 years old and that's actually good. In the 1950's, few kids lived to be school aged. I sat down with a family who is living with CF to find out what is being done to help these kids.
Everyone at the OSF doctor's office across from Easter Seals in Peoria knows two-year-old Brooklyn Iund. The doctors on this floor specialize in treating kids like Brooklyn who are living with Cystic Fibrosis. Melinda Iund said, "What makes it really hard with CF is that it is a certain gene and there are so many mutations it makes it hard to find a cure and fight it."
Brooklyn is the best case scenario for Cystic Fibrosis. She only spends around 40 minutes a day wearing a chest compressing vest and taking three breathing treatments, vitamins and enzymes to help her digest food. Dr. Jalayne Lapke said "It takes about 3-4 hours a day. That's separate from eating, drinking, sleeping, going to school. And when they're sick it takes longer."
One in 30 people carries a gene for Cystic Fibrosis. When two people who carry the gene have a baby, that baby has a one in four chance of having C.F. Dr. Lapke said, "Many, many many people if not most of patients with Cystic Fibrosis- when you look back, they didn't know of anyone to have cystic fibrosis in their family."
Melinda knew when she was pregnant with Brooklyn there was a chance she would have the disease, but Brooklyn wasn't diagnosed until doctors admitted her into the hospital for failure to thrive. Melinda said, "When she was a baby we used to put cream in her food so she could gain weight. Most people who have C.F. are already on high calorie diets because they take so much energy to breath-that they have to have those high calorie diets just to help their body function."
Brooklyn is at 50-percent for her height and weight. If she goes below that, she will have to increase her calorie intake and start doing more expensive treatments. Melinda said"I know a gentleman right now who is actually waiting for a lung transplant and he says his medications run on average without insurance about 10-14 thousand dollars a month."
For now, Brooklyn is as healthy as she can be and thanks to new research she has the opportunity to live into her 30's or 40's--and hopefully even longer.
There is some good news for expectant parents in Illinois. This year Illinois started screening all newborns for Cystic Fibrosis, so those babies can start getting the treatment they need before their health starts to fail.
-NewsAnchorMom Jen
Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.
7 comments:
My son uses the same Chest compression vest and thank goodness it is out there. My son doesn't have CF but he uses the vest to help with the secretions that he gets from aspirations that lead to challenges with his asthma. Thank goodness it is out there and that we can use it and IT WORKS!
Melinda says Brooklyn's chest compression vest was around $15,000but she will get a new vest as she grows that will not include an additional cost. She really likes hers too.
I too have a daughter with CF who is currently 2 months old. So far she is doing great with breastfeeding which most moms can't do because the children with CF need to consume more calories. My daughter was 6lbs 10oz at birth her weight lost after birth brought her down to 5lbs 15oz and is now currently is at 11lbs 10oz. The only feeding issue we are currently dealing with is reflux which is being treated with medicine. We have not been taught the Physcial Cheast Therapy PCT yet becuase of my daughter's reflux. I would like to know what mutations does Brooklyn has. My daughter has two copies of the Delta F508. Also how has Brooklyn's weight been since birth? Any tips or advise on how to handle normal day life with a baby with CF, such as going food shoping, out to resturants with family, ect.?
For those of you with diagnosed CFers, there's a great online community that can help you answer questions and be a support system.
http://forums.cysticfibrosis.com/
I have two copies of the DF508 gene as well and I'm 26, happily married and a marathon runner, so don't put any limits on your kids, they can strive for anything!
Thanks Lindsey. That's wonderful! Dr. Lapke says she has four former patiens who just had babies. She says it's a misconception that people with CF can't have kids.
I did send the question for Melinda to her. I am sure she will get back to us.
Brooklyn has the most common gene mutation - Delta F508. She had reflux as well and used medicine but must not have been as bad because we were still able to do manual chest therapy. Brooklyn was born at 6 lbs 13 oz and went down to 5 1/2 pounds in 4 days and stayed that way for two weeks until being admitted for failure to thrive. While there, that is when the blood test came back (that was taken 10 days earlier) confirming her CF. Brooklyn's weight as a baby was up and down. Dr. Lapke did seriously consider a feeding tube - but we kept perservering. That is when we even started feeding her cream. She has been at about 50% for height/weight combined for about 8 months. As for "normal" life, I was VERY worriecd about people being around her as a baby because we had been in and out of the hospital (and visiting several docs a week). I allowed myself to say NO to many things. I asked people to stand back if they want to view the baby because germs can travel up to 3 feet (especially if coughing). I did things slowly as I felt comfortable with.....going to the store with the baby during the day, eating out, shopping. Now it isn't as big of a deal. She even goes to Mother's Day Out at a local church. I always keep the snack packs of applesauce next to the enzymes and plastic spoons so when we went out, I had them ready to put into my purse or diaper bag. If people offer to help....TAKE THEM UP ON THE OFFER. It allows you to regroup yourself and provides someone an opportunity to make them feel good.
If anyone wants to contact me directly regarding CF, please feel free to e-mail me at tmiund at sbcglobal dot net (I think people can figure this out) :) I can also give you information about the Breath of Life Gala we will have Sept 2009 and keep you posted on the annual great strides walk.
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