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.