March is Brain Injury Awareness Month.
Brain injuries can result from many causes. One of these causes is anoxia (lack of oxygen) as a result of a SCA.
As many as 18% of those who survive an out of hospital SCA have a moderate to severe brain injury.
For someone who is diagnosed with a SADS condition after surviving a SCA, they are not only adjusting to a new cardiac diagnosis and treatment, but often are dealing with the effects of the SCA itself.
SADS staff had the opportunity to interview Rebecca Hernandez, whose husband Eddie is affected by Brugada Syndrome and is recovering from a SCA and a resulting anoxic brain injury.
Can you tell us how you found out that Eddie has Brugada Syndrome?
I had never heard of Brugada Syndrome prior to Eddie’s SCA. He had what I guess you could describe as a syncope episode a few years ago after taking a Zyrtec. I rushed him to an urgent care where we were told he probably just suffered an allergic reaction. We were also told his EKG showed RBBB (right bundle branch block). The doctor told us it was normal and to follow up with a PCP and that was it.
Fast forward to a year ago, I was being told on day 2 after his SCA that he most likely suffered cardiac arrest multiple times due to a rare genetic disorder called Brugada Syndrome. I threw myself into researching the diagnosis the day I was told this was the culprit. Week 5 after his SCA, the doctors were able to verify that in fact he did have Brugada Syndrome. There are a few ways to verify this theory, but the doctors were certain this was his diagnosis after ruling out other electrical heart disorders.
What have been some of the biggest challenges your family has faced?
The biggest challenge in the beginning was not knowing what type of recovery he was going to make. From the get go, I was told because he had sustained anoxic brain injury due to the cardiac arrest, he most likely would not have a good outcome. I was told on the 2nd day that I would be lucky if he remembered my name. It was also challenging getting over the fear of this happening again, wondering if our daughter carried this Brugada gene mutation, and all the unknown that’s circled around his diagnosis.
Every day was a constant battle of trying to get doctors to take Eddie seriously and not just write him off. That’s the sad thing about anoxic brain injury patients. Doctors are quick to write them off and give little to no hope to their families because there is little legitimate research that says these patients can recover.
About 6 months after Eddie was in the hospital, we were able to move forward with genetic testing for our daughter. Her cardiologist had Eddie do a saliva test to narrow down which exact gene was effected. With his results, we were then able to test our daughter via a blood test. Approximately 6 weeks later, the results confirmed she too has Brugada. Her ECG looks normal- but then again so did Eddie’s except when he was very ill in the hospital.
It is scary wondering about all the “what ifs?” when it comes to your child. It was absolutely devastating to know this is something she has. But, we believe knowledge is power and now she is able to be monitored.
Now that Eddie is home and has made an amazing recovery, the biggest challenge we face is what does our future look like. We are still trying to figure this one out day by day. He was left with several deficits that will forever affect his ability to work and navigate this world without a little help. But we are hopeful things will continue to get better.
What have been some of the positives in this journey your family is going through?
This journey has helped me to adopt this attitude of always finding the silver linings in life. Especially when you are thrown into a crappy situation. You almost have to in order to progress in the right direction. This situation has taught us valuable life lessons at such a young age. Each day is a blessing and we always try to make the best of things.
Through this journey we have been fortunate to meet some amazing people. Our tribe. They’ve loved on us and supported us which has really helped us to stay strong. I have also found that by sharing our story and helping others advocate or navigate this journey, it really gives me and Eddie a sense of purpose. We hope to inspire families and married couples by sharing our experiences.
But most of all, it’s made our little family of 3 incredibly strong. And that in and of itself is the biggest blessing.
You have shared your family’s story on social media (and now on our blog). Can you share what has motivated your family to share your story?
I’m a part of some pretty amazing support groups through Facebook. These groups and these people have really helped push me to be the best advocate I can be. I found myself staying up late at night skimming the boards answering questions and reaching out to other moms thrown into this journey via PM. And then when Eddie came home, I would read to him other people’s stories which gave him so much hope.
We decided we would like to start our Facebook page, Anoxic Brain Injury: through love and faith not only to share his journey, but to reach other people looking for support. We love sharing our story individually and as a married couple. We hope to inspire others not only that recovery is possible but that marriages can work after these type of injuries if only you are able to put in the work.
As a survivor of SCA myself, I know it is not just the survivor who is affected but also the entire family. Can you share what sources of support have been helpful to you as a caregiver?
Yes, so as I mentioned before, my Facebook support groups really were my greatest resource. There are also pages like the BIAA, Brugada Drugs, and SADS that also provided me with a lot of great information. The information and knowledge is out there, we just have to go looking for it. I know this can be hard when you are thrown into this journey. But it’s so important to utilize resources and find the right information to ensure your loved one is getting the best care possible.
Is there anything that Eddie would like to share with us?
Eddie would like to say that recovery is possible. He likes to say that “even though life may throw you a turd sandwich, you have to slap some jelly on it and make the best of it”. He also appreciates the support and resources SADS provides to families.
Would you like to share your family’s experience with a SADS condition?
Please see our Guidelines For Writers and contact us at SADSblog@sads.org.