Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters and ways all of us can help improve health understanding.

Today, I’m talking with Deborah Wachenheim, who has been working for many years in healthcare advocacy. These issues became more personal with the death of her sister in 2013.

Deb is now speaking out for more education and awareness about mental health issues in general and post-partum mood disorders in particular.

Welcome, Deb.

Deborah: Thank you. Hi.

Helen: You and I have known each other as colleagues for many years. In fact, I even interviewed you for a Health Literacy Out Loud podcast about legislation giving voice to patients and their families.

I was startled to recently read a lengthy article in The New York Times about your sister’s death. Please tell us more.

Deborah: My older sister was about three years older than me. She got married in her early 40s and right away started trying to get pregnant.

Over the next few years, she had a couple of miscarriages, did infertility treatments and then eventually did get pregnant and give birth in the spring of 2012.

The first few months went fine, and then she started to get very anxious about the health of her son. That anxiety increased. She saw multiple doctors. She noticed every little thing in him that she thought was a problem.

That also developed into a deep depression, and she started blaming herself for what she thought were his ongoing health problems.

Helen: They weren’t problems.

Deborah: Right. No doctor could have said 100% at that young age, just a few months old, that he’ll never have any developmental problems, but from what they saw at that time, they said he seemed okay. She kept convincing herself that there was something going on, and she blamed herself.

It was about a 6-month period, from when the baby was 4 months until 10 months, where this was just getting worse. We thought it got better after she started getting treatment.

Helen: Mental health treatment.

Deborah: Yes. She started seeing a psychiatrist. She had talk therapy as well as taking an antidepressant. We thought we saw some very small improvements, so we were hopeful that things were starting to improve.

Ultimately, she took her own life. She jumped out of her eighth-floor apartment building and actually had her son strapped to her. She did die. He survived and actually just had some bruising on his cheek.

He is doing very well now. He is getting close to two and a half years old and is doing wonderfully.

Helen: Wow. What a story, Deb. Hearing you say it, I just have goosebumps all over. I had read the article. You have an unusual last name, so I thought of you right when I saw your name written in it.

What a story. You’re sharing it in such a public way. I’m so glad that little boy is doing well.

Deborah: Thank you. It’s been very important to me and my other family members, my brother and his wife in particular, to really speak up and try to help there be more education, information and awareness.

Like you said in the introduction, I’ve been learning more about mental health in general, that there needs to be a lot more education. We’ve really been focusing particularly on the area of post-partum mood disorders.

Helen: Thank you for doing that. You and I decided to do this podcast on this topic. It’s really not the usual Health Literacy topic, but there’s an important message to share beyond this very vivid story. I see that some of those issues have to do with communication.

Yes, there are issues, and we probably won’t go there with the issues about mental health per se. But how do you communicate this with others?

Probably all families, and certainly mine, but I think it’s a great common denominator, have some troublesome family issues. Perhaps they don’t talk about it a whole lot. When it comes to that next generation, how do we talk about this? How do we talk about this with younger children?

With your nephew, you have an active role as being his loving aunt, but we all have other family members. How do we talk about such troublesome family issues, whether it is suicide or mental health issues but even financial concerns, prison time or drug abuse, all of those things that used to be unsaid?

Deborah: At the time of my sister’s death, my daughters were a couple of years younger. They are now nine and six, so they were a couple of years younger when it happened. They had no idea that there was any health concern going on with her.

We knew about what was going on with my sister’s mental health over those 6 months, but from my daughters’ perspective, especially comparing it to when they saw my father pass away a couple of years before who was in his 80s, had cancer and was in the hospital, they had no reason to think that there was any health concern with my sister.

Suddenly, my sister had died, and in the midst of the shock, grief and everything else, I was confronted right away with thinking, “How do I start talking to my children about this in a way that they can have some understanding?” but not necessarily at the tender ages of seven and eight, or whatever ages they were at that time, not necessarily having to know every detail, of course.

Helen: As I’m putting this together in my mind, you were dealing with a huge emotional array of things that were going on in your own life. Your sister just died in this very terrible way, so you have to deal with all of those issues. Your whole family is dealing with it.

Now you have to address it with children and be the mom to the children in something that was just so out of most people’s life experiences.

What can you share with us about how you talk to children about troublesome issues like this?

Deborah: Of course, I’m talking from the perspective of someone who had children of those particular ages. Obviously, at different ages, it’s different.

I had the fortune of actually being able to sit down with a psychologist. She wasn’t a child psychologist, but did work with women with post-partum mood disorders.

She happened to be at the synagogue the day that we were there meeting with the rabbi to discuss my sister’s burial. He said, “There’s this woman who happens to be here today for another meeting. I think you guys would benefit from meeting with her.”

That was when I first started hearing how I can talk to my kids about this.

What she said to me was, “Don’t lie to them, because someday they will find out all the truth, and you certainly wouldn’t want them to look back and say, ‘Why did you tell me a completely different thing when this is what actually happened?’”

You certainly don’t have to tell them everything. You go with their questions and what they seem to be asking.

She said, “What you could do is even bring in your father’s case to give them some sense of things.” My father had a heart condition and had cancer. You could say, “You saw your grandfather in the hospital. His heart got very sick. It couldn’t really work anymore, his body couldn’t handle that and he passed away.”

You could talk to them about how your sister had something called post-partum depression, it affected her brain and her body at a certain point couldn’t handle that illness. You describe it as another type of illness.

Helen: That’s interesting. It’s putting context around this, and it sounds like the context in a way is illness and then death. You’re talking about how they’re different, too. One is an 80-year-old man in the hospital for this and then your sister.

That’s part of, “Don’t lie, but don’t tell everything”?

Deborah: Right. Of course, it can be more complicated when it comes to mental health. My older daughter said, “She hadn’t been sick. I still don’t understand.”

She also had reacted at one point.

I did talk to her about post-partum depression being something that happens to some women after they give birth. She knew it was connected to the birth and that she was very sad, but she wasn’t sad because of having the child. Something changed in her brain. It sometimes happens when you give birth.

A few days later, my daughter said at one point, “I don’t want to have children in the future.” I said, “Why not?” She said, “I’m afraid what happened to my aunt will happen to me.”

Then I talked about the statistics. Obviously, she’s young. In 20 years, she’ll know more about all this.

That is an example of her having that confusion in her head. Her question was, “What does this mean for me someday?”

Helen: It’s really going with her questions. Don’t tell everything. Don’t lie.

You are a public advocate. You’re always advocating for healthcare issues beyond your own experience. Have you learned other tips we should be doing, put in our lives, or help teach others?

Deborah: I think there’s another piece that can complicate this. It’s the internet. I think that’s where I want to think about how this might impact when I talk to her.

Helen: When you talk to your daughter?

Deborah: Yes, when I give her more detail. There were newspaper articles after my sister died because of how it happened. It was covered in the news. Then there were The New York Times articles that you referenced. We worked closely with a The New York Times reporter on those.

My daughter could Google my sister’s name or my last name or whatever it could be and come across especially the initial articles, which were very scandalous.

In any case, even if she found the more informative article, you have to keep ahead of kids finding information. This, of course, can apply across anything. They can go online and find information about anything if they know how to do searches.

It’s keeping ahead of or being prepared for them to come to you and say, “I read X online,” whether it’s about my sister’s case in particular or something else.

Another example is they don’t know all the details of what happened with the Boston Marathon bombing. They knew that they had to stay home from school. They knew that I couldn’t get back here from New York. My husband gave them some general information. He said, “There are some bad people out there. They’re still looking for them.” Of course, there was a ton of coverage.

It was figuring out how you try to go with that talking to your kids.

Helen: I’m also thinking it goes beyond the internet and Googling. You can also hear it from somebody else in school. The story can just grow and grow.

How do you deal with that when your children find information or extra information in another way?

Deborah: My hope as a parent is that they will always feel comfortable coming to me and talking to me. Of course, they’re still young enough that I think they do. When they’re teenagers, we’ll see what the story is.

Maybe you have a relationship where they feel comfortable coming and saying, “Someone at school said X.” It could be about drugs, sex or whatever it could be. They ask, “What does that mean? Is that something that I should learn more about?”

Whatever their questions might be, I’m hoping that they will always see that door as being open and they can talk to me about what might be tough and sensitive.

For example, my daughter and I were once at a park and we smelled something. A few people were smoking cigarettes. They looked like cigarettes, but she said, “What’s that smell?”

Then I said, “Well, it’s another type of thing you can smoke,” and we talked about drugs.

I think they see you as someone who will be open and honest, but you have to think to yourself, “How much openness and honesty do they need at X point?”

Helen: These principles apply in so many ways. They’re part of being a good parent, relative and friend. It’s that open honesty and communication, going with the other person’s questions, being prepared that there may be more underneath this and telling the truth in ways the other person can understand.

I’m actually seeing that in context for many health issues, too. Are there ways that our listeners can be learning more about how to communicate in this very caring and thoughtful way?

Deborah: There’s one resource I would like to mention. Again, this is particularly around talking to your kids about death and around family members or close friends, whatever the case may be.

There’s an organization based in Arlington, Massachusetts. It has wonderful resources online, and they also take people in person. It’s called The Children’s Room. They work with people on how to talk with grieving children and how to support grieving children.

I would also like to mention Post-Partum Support International, which is an organization that works across the country and internationally on raising awareness and providing support to those who are experiencing post-partum mood disorders like post-partum depression.

Helen: Thanks for those. We’ll have links to both of those resources on the Health Literacy Out Loud web page for this podcast. We also will have links to the two The New York Times articles, one very much focused on your sister and one focused more on post-partum illness in general.

Thank you for all you’re doing and for sharing this with listeners of Health Literacy Out Loud.

Deborah: Thank you.

Helen: As we just heard, health communication can be very difficult. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com.

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Until next time, I’m Helen Osborne.