Rachel Malec's story - Family history of brain aneurysms

Rachel Malec’s Story – Family History Of Brain Aneurysms

My brain aneurysm story truly began in 1982, 4 years prior to being born. My mom’s brother a healthy active 32 year old suddenly passed away without any warning, it is a tragedy that forever changed our family. My mom shared stories and memories of my uncle throughout my entire life. She also shared that he died from a berry aneurysm rupture, which can run in families. Shortly after his death my mom had head imaging for aneurysm screening and did not have an aneurysm. My mom changed primary care doctors several times in her life, despite having a documented family history of aneurysms, further follow up from that initial head imaging in 1982 was never recommended.

In college I suffered a concussion requiring a head CT and although unrelated, my mom anxiously asked the ER doctor “can you see if she has a brain aneurysm? They run in my family.” I remember the ER doctor confidently saying no. Having a concussion was not the best news byt we both felt so happy to hear I avoided our family history.

In 2017 I gave birth to my first son, 10 months later he was diagnosed with an incurable brain condition called hydrocephalus. He had brain surgery shortly after his first birthday. My mom again, made sure I asked our neurosurgeon to check my son for an aneurysm, “as our family had a history of them.”

My mom stood by my side, by my son’s side and was his biggest advocate. She was more than a grandmother, she aided him in reaching therapy goals, was a shoulder to cry on and the strength I needed to fight for my son’s life. She truly was just so much more then I could never put into words.

My mother was an advocate for hydrocephalus, attending walks and advocacy events at capitol hill, volunteering time at fundraisers and supporting other local children however she could. She knew the importance of people rallying together for change.

October 29th, 2020, I was trying to reach my mom whom I just saw the day before, her last words to me were “I’ll see you tomorrow”. That morning she spoke with my sister on the phone, my dad chatted with her right before he left their home that morning, she was laughing and joking while drinking her morning coffee.
Just minutes after he left their home my beautiful, funny, full of life and health, mother suffered a basal artery aneurysm rupture. That was it, no warning, no second chance, no fight, no tests or surgery, no time to say goodbye, tomorrow never came for us.

Hearing my mom’s words of advocacy throughout my life about brain aneurysms and their familial tendency I reached out to my doctor to see if I could get screened for an aneurysm. I was referred to a cerebrovascular neurosurgeon. He explained that he recommended aneurysm screening in family members starting at age 20 and if an aneurysm was not detected to continue screening every 10 years.


My heart sank, I knew my mom despite being a brain aneurysm advocate my whole life was never told this and felt she did everything she could by getting screened once. He also explained that a MRA is the gold standard for detecting aneurysms and that CT I had in the ER 10 years ago for a concussion was not a way to tell if I had an aneurysm.

December 2020, 2 months after my mother’s death I was diagnosed with twin internal carotid artery aneurysms. Due to their size and location our current plan is to watch them until treatment is needed. I will be monitored for the rest of my life as I am at risk for developing more aneurysms. When the time comes, I will have surgical treatment.

Due to my mother’s death and her advocacy, I get a chance to live, to raise my boys, to beat my family history. I never would have looked into screening because the ER doctor in college falsely reassured me I did not have an aneurysm.

I mourn my mom being robbed of that chance. She was a healthy active mom, grandmother full of life. We had so many plans of us, trips to take, goals to accomplish and moments to celebrate. One of our biggest dreams was to watch my son graduate from high school someday despite being told he may never walk or talk.
My mother could still be here with us today, loving, supporting, and fighting next to me, if better screening was available.

Brain aneurysms are treatable and have a good prognosis if detected before rupture. Screening and education to medical providers must be improved, the price of a rupture is too high.

Advocacy creates change and together we can accomplish so much. I hope to share my mom’s story so her life can save others. May her passion for advocacy and helping others continue through death. I promise to advocate for others and share our story as my mom advocated for me and my son until her last breath. I love and miss you mom; I hope you’re proud.

 

Learn more facts about brain aneurysms here.

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