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.

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.

San Diego Local Raises Awareness

Local San Diego girl, Lindsay Wadleigh recently auditioned for American Idol. In this interview she talks about her personal struggle with cystic fibrosis and how she's making a positive difference by using her voice to increase awareness of this life-shortening disease.

Lindsay Wadleigh is Singing at the Top of Her Lungs

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."