Adoption and Cystic Fibrosis

Today's Q&A is courtesy of Laura Christianson, author of The Adoption Decision and The Adoption Network.

Q. If I have a chronic medical condition, will it exclude me from being eligible to adopt a child?

A. Not necessarily. While adoption professionals do evaluate the health of the prospective adoptive parent(s), their main concern is whether a person's health issues will interfere with or prevent that person from being an effective parent.

If you have a chronic medical challenge and want to adopt, it's important to share openly and honestly with your adoption social worker, and explain the ways in which you are being proactive about managing your health issues. Adoption social workers aren't looking for excuses to turn prospective parents down; they are looking ways to say "yes."

I know several adoptive parents who have chronic medical conditions—they often adopt a child who has the same condition. Adoption social workers are delighted when this happens, because children with medical issues are considered "hard-to-place." When a parent adopts a child who has the same medical challenge, the child often receives the best treatment possible because the parent knows exactly what the child needs.

Laura is a freelance journalist specializing in adoption-related issues. She is the author of The Adoption Decision: 15 Things You Want to Know Before Adopting and The Adoption Network: Your Guide to Starting a Support System.

Her Exploring Adoption blog received Forbes magazine's 'Best of the Web' rating. Laura has written numerous general-interest features and essays for national and regional publications. She speaks regularly at writers' conferences and other events.

Newborn Screening for Cystic Fibrosis Offers Hope

Imagine how difficult it would be as a parent, to take your sick child from doctor to doctor, and none knew what was wrong. The doctors seem to think your baby is merely battling a stubborn cold, or has food allergies of some sort. You know that can’t be the correct diagnosis, so you exhaust yourself searching websites that describe your little one’s symptoms, but never can quite put your finger on anything that explains it. Then you find it.

Cystic fibrosis.

Cystic fibrosis is the most common genetic disease affecting the Caucasian population. It is caused by a mutation in a particular protein in a person's DNA. This mutation causes a malfunction in the sodium and chloride transport channels. As a result, large amounts of salt are secreted in the sweat of a person with cystic fibrosis. Additionally, the body produces abnormally thick, sticky mucus which creates problems for nearly every major body function, particularly the respiratory and digestive systems.

People with cystic fibrosis are prone to frequent bouts of pneumonia and other lung infections. This is because bacteria become easily trapped in the sticky mucus that blocks the airways. Airway clearance devices and preventive maintenance medications are typically used to avoid infection. Such methods include inhaled antibiotics, bronchodilators, aerosolized medications, and chest physiotherapy.

Digestive problems also arise due to the thick mucus in the intestines and around the pancreas. Pancreatic insufficiency results when the pancreas cannot secrete the necessary enzymes to break down food. Enzymatic supplements are taken orally to aid in digestion. However, even with the supplements, people with cystic fibrosis are typically malnourished because the mucus lining the intestines prevents major vitamins like A, D, E and K from being properly absorbed into the body.

Treatment of cystic fibrosis
Over the last two decades there have been incredible developments in the treatment and understanding of cystic fibrosis. Ongoing research and the development of new medications are enabling some cystic fibrosis patients to survive into adulthood-something that was virtually unheard of in the past. Unfortunately, a cure remains to be found. The Cystic Fibrosis Foundation reports that the mean life expectancy is a mere 36 years of age.

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You’re stunned as you read about it. It sounds so scary, but all the symptoms add up and are exactly what your child has been experiencing over the last year or more. Loose, greasy, smelly, bowel movements; persistent cough and recurring lung infections; digestive problems; failure to gain weight; those funny shaped fingers. The list goes on and you can hardly process it. You are frustrated that the doctors never even thought of testing your child for this monster disease, and you wonder how much damage may have already been done to your little one’s body. You are angry, confused and sad all at once and your only thought is to get your child tested for cystic fibrosis as soon as possible.

Now imagine the empowerment of knowing as soon as your baby was born, about the unique health care requirements he or she would need. You and the doctors could work together to devise a treatment plan that would ensure the best possible health and quality of life for your son or daughter. Instead of fear of the unknown, you are given hope for the future.

Mandatory newborn screening for cystic fibrosis is not yet widespread. As of June, 2007, only 38 (see list, below) states in the U.S., including Washington D.C., had mandatory screening programs in place. Although more are planned, they cannot be implemented soon enough.

States with Mandatory Cystic Fibrosis screening for Newborns

Alabama*
Alaska
Arizona*
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawai'i
Illinois*
Iowa
Kentucky
Maryland
Massachusetts
Michigan*
Minnesota
Mississippi
Missouri*
Montana
Nebraska
New Hampshire
New Jersey
New Mexico
New York
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Virginia
Washington
Wisconsin
Wyoming

* these states have not yet implemented their mandatory screening program

According to the Cystic Fibrosis Foundation, the nation’s largest provider of funding for CF research, “Early diagnosis allows for immediate intervention with specialized therapies” which “have been shown to result in improved height, weight and cognitive function, and also may help maintain respiratory function. The greatest long-term benefit of newborn screening and early intervention is an increased life expectancy fewer hospitalizations over the course of a CF patient’s lifetime.”

California is the most recent state to require mandatory screening in newborns. It is the hope of many that the remaining states will soon be on board with this potentially life-enhancing measure. The following states have yet to mandate a newborn screening process for CF:

Arkansas
Colorado
Idaho
Indiana
Kansas
Louisiana
Maine
Nevada
North Carolina
Tennessee
Texas
Utah
Vermont
West Virginia

If your state is one of those listed above, consider taking action. Let your legislators know that it's important to implement newborn screening for CF. Here's how you can make that happen.

1. Contact the state health department to find out if CF is being considered for newborn screening.

2. Call or write to your governor. Visit the Web site of National Governor's Association www.nga.org to learn how to contact your governor.

3. Call or write the state legislators. www.ncsl.org is the website listing all the contact information for your state.

Partnership between Patient and Physician

Back when I was in college, I was still attending a pediatric CF clinic. My doctors were wonderful and knowledgeable--about pediatric things. Basically whenever I came in for an appointment it was because I needed something. I would request to start IVs on such-and-such a date because it worked well with my course schedule. When claritin didn't seem to be helping me take care of my allergy symptoms, I told them I wanted to be switched to Zyrtec.

Primarily they may have seemed like mere suppliers, but there was much more to it than that. I saw them not only as suppliers, because together we had developed a real synergy. They knew I was serious about my health and that I was good at reading my own body. They gave me the freedom to be an independent CF adult, and reminded me that they were always there for me when I needed them. My stage of CF at that time was quite routine, which is also why I saw them as suppliers. There were really no surprises with my health.

It came to a point however, where I had truly outgrown the pediatric clinic. They sat me down and said "we'll be happy to keep seeing you, but we think you'd benefit from the adult clinic." They left the decision up to me, again reinforcing the importance of being my own advocate when it came to my health.

Now that I'm at an adult clinic, I see things as a partnership. I tell my doctor what's going on, and he tells me how to manage it. He always lays out a few options for me, and together as a team, which includes my wonderfully supportive husband, we decide what is the best course of action for my health and quality of life. There have been new challenges over the last couple years. Things that were unfamiliar to me, which is why I needed to rely heavily on my doctor's expertise.

Even with all his knowledge of CF, he's still learning the specifics about ME. That's where our partnership comes in again. It's a give and take. He needs me to communicate with him effectively about what's working or not working for me; I need him to take my feedback into thoughtful consideration and present the best plan to meet my needs. When that happens, I benefit tremendously.

I like being actively involved in my own health care. I like knowing how and why things work--that's just my nature. On the other hand, I like the freedom of not having to be the one with all the answers. Because I have a doctor I trust, I don't have to waste precious energy second-guessing his opinions or treatment plans.

Are CF Patients More Prone to Psychological Problems?

Many individuals with chronic illness or disease are likely to experience emotional problems such as depression or anxiety. In many cases the nature of the chronic illness is the underlying cause of mood disorders. Poor physical health can lead to psychological distress, and vice versa. Determining the course of treatment in these cases requires that the patient and diagnosing physician work together to find a solution that address both the chronic illness and the distressing psychological issues in tandem.

In the case of cystic fibrosis (CF) patients, psychological function has been assesed, but with varying results. The medical community at large is still working to better understand the link between the biological and psychological aspects of how patients with CF cope in the face of an ever-progressing disease. Some studies suggest that as patients with CF age, the likelihood of emotional disturbance increase. This is possibly due to patients being forced to break new ground in world that had been previously explored by relatively few cystic fibrosis adults.

As the median survival rate, as reported by the Cystic Fibrosis Foundation, continues to increase, adults with CF find themselves in uncertain and untested territory. The stress and anxiety that occurs as a result is likely to contribute to psychosocial and/or psychological impairment. It was hypothesized, by Deborah L. Anderson, PhD; Patrick A. Flume, MD, FCCP; and Kristina K. Hardy, PhD in their article Psychological Functioning of Adults with Cystic Fibrosis that “the higher prevalence of psychopathology may be related to disease severity rather than chronologic age.” (Chest 2001;119;1079-1-84. DOI 10.1378/chest.119.4.1079). However, their study concluded that adults with CF do not demonstrate significant levels of depression, anxiety, or other psychopathology. The rate of clinical depression in their sample "was equivalent to that found in the general population."

The study goes on to qualify their results by stating that just because adults with CF do not, as a group, exhibit a higher propensity toward depression or anxiety, that is not to say that CF patients are all psychologically healthy. Other factors, such as family history of mental illness, or even external factors unrelated to cystic fibrosis (e.g.. loss of job, failed marriage, emotional trauma) may lead a CF patient to undergo psychological analysis and treatment.

One of the things that contributes to better mental and emotional health for CF patients is having a strong support system. Family members, spouses, friends and church involvement all provide excellent sources of encouragement for people who are facing the difficulties of day to day life with a chronic, incurable condition such as CF. For this reason, it is increasingly important for the CF Team to include a clinical social worker or psychologist as a means to assist those with CF who may be having trouble finding a support community.

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Additional Resources:

Treating Depression in Patients with CF
Psychosocial Issues and CF
Psychosocial Aspects of Cystic Fibrosis (A Textbook for Medical Professionals)

Clinical Trials: Pathway to a Cure

One of the Cystic Fibrosis Foundation's roles is to fund the research that may someday produce a cure for CF. While people with CF and their loved ones wait for a cure, drug companies are hard at work learning more about the disease and looking for ways to manage the various aspects of it. Many people are unaware of the lengthy process of researching and approving medications. One of the ways to increase awareness of the disease and to educate others is to participate in clinical trials.

As the single largest sponsor of cystic fibrosis research, the Cystic Fibrosis Foundation aims to double the number of cystic fibrosis patients who enroll in clinical trials. To meet this goal, the CFF has set up a new section on their website where people can go to learn more about the clinical trials.

Personally, I have participated in a few different types of research. The experience taught me a lot about cystic fibrosis, particularly about how different medications worked and how my body fought off different infections. Once I had a better grasp of the disease, I felt more in control of it. I felt a sense of accomplishment knowing that I had played a small part in making progress toward a cure.


For more information about clinical trials, be sure to visit these sites:

Clinical Trials relating to Cystic Fibrosis, Currently Recruiting Participants
The National Institute of Health, Clinical Trials Info Page
Cystic Fibrosis Foundation pdf "I AM THE KEY"
Food and Drug Administration Info about Clinical Trials

Perspectives on Educating Others

Don't Assume

(Author Unknown)

Don't assume that because I look well that I feel well. Looks can be
very deceiving. Many days I look great but feel terrible.

Don't say, "I know how you feel." No one knows how anyone else feels.
We all have varying thresholds of pain, and pain cannot be measured.



Don't tell me about your Aunt with so and so disease or ailment and how
she managed in spite of it. I am doing the best I can.

'Don't tell me, "It could be worse." I don't need to be reminded.

Don't decide what I am capable of doing. Allow me to make those
decisions. There may be times I 'm wrong, but I'll know soon enough.

Don't be upset that you cannot ease my problems. It won't do any good
for both of us to be miserable.

Don't ask me how I feel unless you really want to know. You may hear a
lot more than you are prepared to listen to.

Don't assume because I did a certain activity yesterday that I can do
it today.

Don't tell me about the latest fad cure. If there is a legtimate
treatment, my doctor will let me know.

Do realize that I am angry and frustrated with the disease, not with
you.

Do let me know that you are available to help me when I ask.

Do offer me lots of encouragement.

Do understand why I cancel plans at the last minute. I never know from
one day to the next how I will feel.

Do continue to invite me to activities. Just because I am not able to
bike along with the gang does not mean that I can't meet you for the picnic
at the end of the trail. Please let me decide. Thank you.

Quality Improvement in CF Care

The Cystic Fibrosis Foundation (CFF) continues to make a difference in the lives of patients with CF and their families. In order to facilitate excellence in health care and increase the level of involvement between patients, their families and the cystic fibrosis team clinic, the CFF has provided care center data via their website.

CFF Care Center Data

" Reporting data from our nationwide network of centers is part of a comprehensive quality improvement effort by the Foundation. Our goal is to help people with CF live longer and better lives. In fact, the Foundation is one of the first health organizations in the country to provide health outcomes data to the public, demonstrating an intense commitment to raise quality of care to an even higher level." --Robert J. Beall, PhD, President CFF

This effort has been more than 6 years in the making. The CFF hopes that this data proves beneficial to the CF community. By publicly reporting Care Center Data, everyone involved with CF can be encouraged and inspired to raise the bar to new heights. As the president of the CFF puts it "Quality CF care is more than numbers."

As a person with CF I have a unique perspective on quality being about more than numbers. Some of the numbers that I think about are my weight, body mass index, lung function, the amounts of medications I take and the number of days I have to put life on hold when exacerbations occur. Even as those numbers change, my overall quality of life is excellent, and that is, at least in part, due to the excellent care I receive at the CF Adult Clinic.

Currently, there is no cure for cystic fibrosis. The precious lives of children and young adults are being lost every day to this devastating disease. If you would like to help support the Cystic Fibrosis Foundation in its ongoing research to find a cure for CF, please consider making an online donation here. Approximately $.90 of every dollar is used effectively to fund research and provide many tomorrows for those who battle CF.

If you would like to read a brief description of cystic fibrosis, please follow this link.
If you are interested in learning what a typical day is like for an adult with CF, you can read my article here.

Parents: Communicating the Reality of CF to your Child

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head. Here are some thoughts I can share that may ease the burden of telling your child about the harsh realities of the disease. I've broken them down by age group.

Kindergarten - Third grade:

They explained that my body didn't work the same way as other people's. We didn't use the word "fatal" or "disease." Mom said that if anyone ever asked why I had to take enzymes or stuff, I should just say "they help my body work better." We talked about tummy aches and why it was important for me to take my pills so that I wouldn't have so many tummy aches.

Fourth grade - Sixth Grade:

This was the age when I started reading more. Discussions about CF were, in some ways, similar to being given "the sex talk." I didn't know enough to ask a lot of questions, and Mom wasn't going to go into detail that I couldn't handle about CF. Mostly I was told that if I wanted to be able to participate in all the things I loved (school, sleepovers at friends, etc.) then I had to be sure to obey the rules about taking my medications.

It was during this time that I also learned to play the french horn. Mom and Dad encouraged me to play a large wind instrument. They said that someday cystic fibrosis would make it very hard for me to breathe well, but the more exercise I gave my lungs, the easier things would be. (And they are!)

Junior High:

This age was awful. I think that's when I was beginning to know that CF was a VERY serious thing. I had read A Time to Die (Lurlene McDaniel) and "Toothpick (K. Ethridge) which were books about teen girls with CF. I had a lot of questions for my mom and dad about CF after reading those. They always answered me honestly. But they also made sure that I understood that I had a responsibility to live in the here and now and not worry about all the "What ifs." They said "there will be time for that, and when that day comes, we'll handle it together."

High School:

Mom and Dad told me once again that I was responsible for making good decisions. They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

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I don't believe in sugar-coating things, but the stark realities don't need to be dropped on a little kid either. Talk about the meds and the treatments and do your best to describe how they work and why they're important.

Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

As far as how to say "it's fatal," I wish I had the right words for you on that. Tell your child that CF is a VERY serious disease and people (I stress the word people so that you remain future focused) can and do die from it. Remind your child that there is a lot to live for an a lot of things to experience and enjoy before that happens, and that's what you intend to help him or her accomplish.

This is something you probably want to emphasize: That she can't participate in fun things if she doesn't follow the rules. That's a good life lesson, CF or not. By phrasing it this way, it makes more sense to a child (whose reasoning skills are limited) than to say "take your meds or you're going to die."