The Pulse Issue #2 - 6 Months of Impact

Can you believe its nearly 6 months ago that Brynne and I decided to officially launch Heart Warrior Ministries?

Everyday we are humbled at how the Lord has blessed this organization through the many donors, volunteers, and supporters who contribute to the impact we illustrate below.

In just 6-months, HWM has been able to witness:

• 68 families served through our various support programs

• 24 active volunteers contributing hours of work a week

• 13 CHD dads connected throughout the US to share and support other dads walking similar paths

• 50 NG/G-Tube supplies donated to CHD families

• $1,400 in cost savings for CHD families from specialty formula donations

• $2,800 donated to CHD families living in the ICU paying for food and parking while their child recovers from open heart surgery or awaits a heart transplant.

WOW thats a lot of impact! And we simply could not do it without the many hands that never cease working towards the goal of better supporting families in thier battle with CHD.

I simply cannot wait to see what the next 6-months hold for this ministry, and how God will continue to use this organization to serve others in this community!

Sam Bish

Executive Director, HWM

So, Your Child Has Received a Brain Injury Diagnosis - Now What?

Introduction

You may be asking why a congenital heart defect page is talking about brain injury. As it turns out, up to 80% of children with critical CHD can face some form of pre or post-operative brain injury as a result of correcting a defect. (citation: here)

But I will be the first to tell you that brain injury is not a death sentence, and you can still obtain a meaningful life with such a diagnosis. So while the words “you child appears to have brain injury” are nothing short of terrifying, I am here to tell you there is abundant hope on the other side of that diagnosis.

We were told many things about Cillians diagnosis. He had global death with significant injury to the occipital, parietal, and prefrontal cortex. In other words, “moderate to severe brain injury” as a result from his cardiac arrest.

I remember the stares. The looks. I could tell they were desperate to give a new mother signs that it will be okay, but truthfully they were unsure whether it would be. And frankly, I don’t blame them from holding back their desire to encourage with false hope to already tender, sore hearts.

I wish I could tell you I handled the brain injury diagnosis well, that I had unbridled hope in those dark days.

But I didn’t.

I was afraid. I was consumed with fear. I could not muster the strength to find a shred of hope that we can adjust to like with this diagnosis: “what will he be like? Will I get his smile back? Will he walk, talk? How will I accept this diagnosis? Will all I see when I look at him is the child that was loss?”

These are terrifying thoughts of course. But the biggest question I had ruminating was, “what do I do now?” Beyond the desperation for hope was the desire to sink my teeth into how to help what I was being told was a helpless situation. 

I had no idea as to what next steps were. While we were very well versed in all things cardio, we now crossed over into an entirely different land, the land of neuro. It was gray, and bleak, with nothing assured or predictable.

So Sam and I did what I thought was the only thing left to do, and scrolled the internet. While I was bracing for bad news as the internet does best, I shockingly found the opposite. In scouring every research article I could find, which were few by the way, I summarized three key findings about infant brain injury:

The younger the brain injury, the better.

They key was IF the brain has established a pathway to a particular task before the injury. If it has learned how to do something, it’s harder for the brain to relearn how to do that very thing after injury.

Notice I said harder, not impossible.

This is why babies who have significant brain injury at birth can relearn how to function perfectly in almost every domain, because their brain is already in the state of learning HOW to do most things. So working around the injury is just part of the task they were already learning how to do. The brain is incredibly plastic, which we have to our advantage. It’s also why doctors can’t predict level of function after an injury since so much goes into that outcome. That’s a huge benefit to you as a parent who has a large role in their relearning how to function.

The first 6 months to 1 year after the injury is when the most rehab will occur

Think of brain injury like any other injury. If you have a knee replacement, they have you up and walking within a few hours post-op. Why? Because the earlier you intervene, the better the outcome. The minute the body responds to trauma it is trying to get back to a state of equilibrium. That will happen with, or without, the injury – so the earlier you can intervene with brain injury to teach the body how to function again, the better.

Therapy is the most effective way to rehab the brain

You will hear a lot of “resources” that could help – like hyperbaric chambers, re light therapy, diet, or others. And I will tell you, NOTHING is more effective then good ole fashion PT/OT/Speech/Vision therapy. Hyperbaric cannot replace that, nor can diet, red light therapy, or any other similar research. Yes, it’s a strong opinion, but it’s the truth.

So what does that mean for you? Well having gone down this road, here are three things you need to do after a brain injury diagnosis. Let this be your next steps

Step 1: Find an Inpatient Rehab Center as quickly as you can

This is where your child will receive intensive therapy multiple times a day. This will help optimize the window of recovery and also teach you what you need to know as you venture down your own therapy road. Some centers have long waiting lists, so advocate with your team your desire to get transferred as early as possible.

Step 2: Construct your team

This team could vary, but generally you will want the following services to be set up upon discharge from the inpatient hospital:

• Neurodevelopmental Specialist. We go to a pediatric brain injury/brain disease hospital. It’s not affiliated with a larger institution, though many are. This is a hospital dedicated to rehabbing children’s brains after injury or disease. We are with a cardiac neurodevelopment specialist who works with children who have had brain injury as a result of cardiac related issues. It’s a team of about 5 specialists who are trained in both their own practice (OT, PT) but also with in cardiac related concerns.

• Vision Therapist. After a cardiac arrest, typically the occipital lobe gets affected. Contacting your state school for the blind (for Maryland, it’s the Maryland School for the Blind) and seeing what services they offer proactively is important. Questions you will want to ask is if a CVI diagnosis is required, if they offer in home services, and how often their therapy regimen is.

• Physical, Occupational, and SLP therapist (private and through the state). All states have something called Early Intervention where children with developmental delays can access free in-home therapy services. You have to qualify, but certain diagnosis make your automatically quality. Brain injury is one of them. Depending on your coverage you can also access private therapy services for all three as well. They can take a while to get in for an assessment so try to arrange this early if you can!

• Commercial Insurance Case Manager. Many people don’t realize that you can be assigned a personal case manager to help with management of complex healthcare needs. We get a direct line to this case manager and we maintain correspondence about all of Cillian’s needs. In cases that you need insurance to act quickly, and in some cases aggressively, they will advocate with third party vendors on your behalf saving you a TON OF TIME. So do it, and thank me later.

Step 3: Make your therapy plan, but with some considerations

• You don’t have to do everything. It’s about quality not quantity. Prioritize your childs therapy needs, and target them. There is a lot of considerations that go into making a therapy plan for your child: your sanity and capacity, if services come to your home or require you to pack up a medically complex kid and travel, how far away the services are, and if your child is sensing your stress in caring for them.  For us, Cillian needs the most intervention with his core development, as core strength is the predecessor to real big functional things, like sitting, crawling, and walking. It’s also the one he is the most damaged in, so that is top priority. We see private and state PT, and much of his private and state OT therapy plan is centered around core development as well. He is needing less vision therapy, so we are scratching that intervention. Aggressively prioritize, then target with your team. And reshape your perspective as a parent that “less is more.”

• Consider insurance restrictions. In some states, if you have secondary Medicaid with a primary commercial insurance, depending on the coverage and state policies you may have to choose between state and private therapy services. It’s yucky, I know. But besides my opinions, it’s a consideration you have to make. Take a look at your insurance and state policies.

• Prioritize your mental health. Kids pick up on when things are not going well, brain injury or not. If you are not okay, know there are resources to help. To learn more about how trauma can impact the CHD community uniquely, visit our blog post.

I will end with the one thing I wanted to hear, that also could have been said safely.

It CAN be okay. With time. With therapy. With hard work. With sacrifice. With doing things the right way. Employ the above steps, and learn to let go of everything else. Stay tuned for an article on tips to help in acceptance of a difficult medical diagnosis.

And in case no one has told you recently, you’re doing great. More than great. You’re a super-parent.

Medical Trauma vs. PTSD - What’s the Difference?

Introduction

Supporting a child with Congenital Heart Defects, though incredibly rewarding, can bring with it its own set of unique challenges, one of which is navigating medical trauma and PTSD.

The effects of witnessing your child going through such painful procedures brought on by a Congenital Heart Defect diagnosis is not studied nearly as much as it should be despite its commonality.

“Recent research shows that parents of children with critical congenital heart disease (CHD) are at an elevated risk for mental health problems. ”

In fact, recent research shows that parents of children with critical congenital heart disease (CHD) are at an elevated risk for mental health problems.

Up to 50% of these parents report clinically elevated symptoms of depression and/or anxiety and 80% present with clinically significant symptoms of trauma.

Stigma around admitting uncomfortable, but normal feelings such as shame, guilt, anger, regret, hopelessness, resentment and more often stymies the dialogue around a topic that I argue needs to be discussed more.

The good news is, there is hope! Early interventions are proven to manage, and in many cases mitigate, mental health conditions brought on by trauma.

In this article, you will learn the differences between medical trauma and PTSD and how to recognize each in yourself, the importance of early intervention and types of interventions available to you, and unique services available to you being a CHD parent.

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Shame, Guilt, Anger, Regret, Hopelessness & Resentment about parenting a child with Critical Congenital Heart Disease.

Shame, Guilt, Anger, Regret, Hopelessness & Resentment.

These confusing and complex emotions are not easy to manage, and can lead the caregiver to feel like they are in a constant state of hypervigilance, experience frequent flashbacks or survivors guilt, feel “stuck” in a particular emotion, or experience delayed grieving. While this can make them feel isolated and alone, quite the opposite is true. In fact, 32% of parents whose children experienced a hospital stay of any kind experienced PTSD symptoms¹.

But I am here to tell you there is hope. A life with PTSD and medical trauma is attainable with the right help.

Lets start by orienting ourselves with what we DO know.

What do we know about medical trauma and PTSD?

1. With trauma and PTSD of any kind, early intervention is the key to reducing symptoms → Longitudinal studies have consistently shown that access to early interventions with therapy accelerates recovery of acute PTSD². This means the longer it goes ignored, the worse the symptoms, and the longer the symptoms are experienced. Intervening with therapy as soon as the traumatic event happens is key to these optimized outcomes.

2. While the benefits of trauma based care is well established, there are still significant barriers to executing early intervention for medical trauma³. This is due to a lack of funding, knowledge from leadership about trauma informed care.

3. Cognitive Processing Therapy (CPT), Cognitive Behavioral Therapy (CBT), and Exposure Therapy, and Somatic Therapy are some of the few therapies that have proven to be most effective at reducing long term presence and severity of symptoms.

Before we learn more about what each type of therapy does, lets first learn about the differences between medical trauma and PTSD.

What’s the difference between medical trauma and PTSD?

Many practitioners consider PTSD and medical trauma to be the same, while others insist of their differences. Rather then getting stuck in the semantics, its important to keep our eyes fixed on the larger lived experience of each and its impact. Let's take a deeper dive into each condition:

PTSD occurs after the traumatic event has taken place and can last anywhere from a few weeks to years after the traumatic event takes place.

Medical trauma is referred to as the event the trauma took place. Some can experience trauma without developing PTSD, but PTSD if experienced always follows the trauma.

Symptoms of PTSD include obsession over the traumatic event, repeated and unwanted memories of the traumatic event, panic attacks, increased startle response and hypervigilance, recurring nightmares and flashbacks, re-living the traumatic experience, severe distress when reminded of the event, and even physical reactions to reminders of the event such as increased sweating or elevated heart rate.

Regardless of if one is experiencing medical trauma or PTSD, the lived experience is real and significant. Let's discuss how you can get help through a variety of resources.

How do we treat medical trauma and PTSD?

Fortunately, there is hope. If treated early, effects of medical trauma and PTSD can be reduced if not eliminated. Finding what treatment works best for you may take some trial and error, so if one of the below does not seem to be working, still remain committed to seeing the process through

1. Cognitive Therapy. This form of therapy uses behavior to address the symptoms of PTSD. The most common forms of cognitive therapy used to treat medical trauma and PTSD includes exposure therapy, Cognitive Behavioral Therapy (CBT), and Cognitive Processing Therapy (CPT).

2. Somatic Therapy. Whereas cognitive therapy is centered around challenging thoughts that lead to PTSD related symptoms, somatic therapy focuses on easing the physical tension resulting from stress responses. This is a good place to start in therapy for those who are not yet able to talk about their experiences.

3. Eye Movement Desensitization Process. This form of therapy is incredibly effective on minimizing if not completely eliminating effects of trauma and PTSD. It involved moving the eyes in a particular pattern while processing through the trauma.

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If you are a family member struggling with PTSD or medical trauma as a result of Congenital Heart Defects, there is an organization dedicated to supporting you through Ollies Branch.

Ollie’s Branch is an access point to mental health specialists that support heart families (including the heart warrior and their parents, siblings, grandparents, and other primary caregivers) through therapy sessions.

To access their services, be sure to visit their website HERE.

Brynne Bish
Director, Heart Warrior Ministries

Brynne Bish, JD, MBA, MS received her Masters in Clinical Mental Health Counseling ad Johns Hopkins University where she specialized in treating clinically ill individuals and their families through the complexities brought on by disability. She was motivated to help others realize their own potential by addressing psychological limitations they have placed on themselves as a result of living in a world with a disability. This largely came from her own experience of being diagnosed with a progressive neurological disease called Spinal Muscular Atrophy and the challenges she experienced in adolescence. She is co-founder of Heart Warrior Ministries that her and her husband created to help other families navigate the challenges brought on by Congenital heart Defects.

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Sources

1 Franck LS, Wray J, Gay C, Dearmun AK, Lee K, Cooper BA. Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: a prospective cohort study. Int J Nurs Stud. 2015 Jan;52(1):10-21. doi: 10.1016/j.ijnurstu.2014.06.011. Epub 2014 Jul 5. PMID: 25047550.

2 Shalev AY, Ankri Y, Gilad M, Israeli-Shalev Y, Adessky R, Qian M, Freedman S. Long-term outcome of early interventions to prevent posttraumatic stress disorder. J Clin Psychiatry. 2016 May;77(5):e580-7. doi: 10.4088/JCP.15m09932. PMID: 27135249

3 Huo, Y., Couzner, L., Windsor, T. et al. Barriers and enablers for the implementation of trauma-informed care in healthcare settings: a systematic review. Implement Sci Commun 4, 49 (2023)

The Pulse - Issue #1 June 2024

Sam, Brynne & Heart Warrior Cillian Bish

When Brynne and I felt called to start Heart Warrior Ministries to support families with a child experiencing Congestive Heart Failure, it couldn't have come at a worse time.

Nothing was stable, assured, constant in our lives. We had JUST gotten out of the hospital living the worst year of our lives. Cillian was still having complications, and we had just moved to Maryland.

To anyone on the outside, we looked crazy. But to God, this was the perfect time to fulfill what He had planned for us all along.

Since launch we have gotten nothing but confirmation that this is exactly how He wants us to use our testimony.

Within one day of launch, we had out first family reach out sharing their difficulty in financially supporting their child’s formula needs, which was averaging them $800 in out-of-pocket expenses per month. We looked at our bank account - a measly $400.

So we asked the Lord, “Lord, if this be Your will, provide the needed funds.” Within 24 hours we had not just the amount we needed, but $20 extra.

““Lord, if this be Your will, provide the needed funds.”

For every need, every family that has reached out, it’s been that way: the Lord supplying our every need. Its been quite incredible to witness, and has affirmed that this is His plan for us in our lives.

We want to thank YOU for donating, supporting, and praying over the mission of this ministry.

Your support has allowed us to launch THREE initiatives:

1) Formula Drive: Through our Robin’s Nest outreach, we’ve begun providing CHD families with free formula for children with Congenital Heart Defects when the formula they need is not covered by insurance.

2) The Oasis: This is a group for dads of kids with Congenital Heart Defects to connect and support each other

3) The Prayer Warrior Group: This is a team of people dedicated to praying for our Congenital Heart Defect Warriors battling their condition.

We simply could not do the work the Lord has planned for us without your help. :)

God is good, all the time -

Sam Bish

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Sam Bish
Executive Director, Heart Warrior Ministires