For Our Heart Kids And Their Families: Goodbye From smallbeats

Can you believe that we have published more than 300 stories for heart kids and their families on smallbeats?

We’ve explained the basic “ABC’s” of heart conditions, and broken down the intricacies of open-heart surgery. We’ve taken you behind the scenes with our staff, and we’ve shared stories from adults who grew up with congenital heart defects (CHD). And yet, it feels like we could still go on and on for another 300+ posts.

However, there’s that old saying that all good things must come to an end—and that time has come for our blog.

This will be the last smallbeats blog. We may be sunsetting smallbeats, but that doesn’t mean we’re jumping ship. Our focus is just going through a bit of a shift. Instead of writing blog posts, we will be working on creating a more robust resource through the Children’s Hospital & Medical Center website.

Sunsetting our blog also does not mean giving up the relationships we’ve built with our patients and their families. We’re ready to move those relationships forward in new, dynamic ways.

As we began to wrap up smallbeats, we started looking through some of our old posts. A few favorites stuck out to us as ones that we hope our readers will revisit and keep learning from.

Post #1: Can Parents Experience PTSD from Their Child’s Heart Condition? (Part 1 and Part 2)

In these posts, we discussed how post-traumatic stress disorder (PTSD) affects heart parents. Although PTSD is usually thought of as a condition affecting soldiers coming back from war, it can actually impact anyone who has suffered from a trauma, such as a parent watching a kid suffer from CHD.

If you have PTSD, there are plenty of ways to get help. Look into the mental health resources at your child’s hospital. Visit a pastor to discuss how religion could help you stay calm. Get plenty of sleep, and keep up a nutritious diet. Please take a look at the posts for more guidance.

A heart transplant is amazing, and it can give your kid a new lease on life. But nothing that good comes for free.

In this post, we looked at some of the average costs associated with a transplant:

Treatment for the 30 days before transplant: $47,200

Procuring the heart: $80,400

Admission to the hospital for the transplant: $634,300

Treatment by the doctors during the transplant: $67,700

Immunosuppressant medications: $30,300

Treatment for the first 180 days after transplant: $137,800

In total, that is close to $1 million for a single transplant. And that doesn’t even include other expenses, like travel to and from the hospital, or wages lost in time off from work.

However, we emphasized this before, and we will emphasize it again: Do not panic. These are base costs, meaning before insurance steps in. If you’re having trouble paying, talk to the hospital billing department about getting on a payment plan. You can make several small, spread-out payments, rather than a big lump sum all at once.

Parenting is already like a full-time job, so parenting and being a caregiver for a child with CHD can be draining. Between the never-ending doctors appointments, the financial strain, and the emotional effects of watching your child get sick, the stress can pile on.

It is so, so important to remember to take care of yourself. Your own health is just as important, and you can’t be on the top of your caregiving game if you’re not healthy.

Get enough sleep, even if that means grabbing catnaps in your child’s hospital room. Prepare healthy, on-the-go snacks ahead of time, so you don’t live off of the waiting room vending machine diet.

If you’re suffering from symptoms of depression, do not hesitate to get help—it’s common in caregivers, and it’s nothing to be embarrassed about.

Sometimes, all you need is a quick little pick-me-up, and that’s why we chose to share this blog post. It’s a collection of quotes that only take a moment or two to read, but it can inspire you indefinitely.

Final Thoughts

In a recent post, Dr. Sean Akers wrote about why we use the term “heart kids.” He ended the post by saying, “These kids amaze us. They have our hearts, and that’s why they are heart kids.”

These words resonate strongly with the entire smallbeats team. And while the blog may be coming to a close, our kids will always have our hearts. They will always be our heart kids.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

2 Responses to "For Our Heart Kids And Their Families: Goodbye From smallbeats"

Brandie

May 17, 2017 at 4:00 pm

I have loved reading your blog and will miss it dearly! It has always been a valuable resource for my family as we embark on the journey to having “heart kiddos”. I hope that it is still able to be referenced in the future?