She appears “normal” and healthy on the outside. She does everything your 4 year old does. She laughs the same. She throws a temper tantrum the same. She thinks potty humor is the funniest thing ever just the same. She comes into your room 20 times every night before finally falling asleep just the same. She plays wholeheartedly with her friends just the same. She fights with her sisters just the same and she loves on her mama just the same.
I worry about her like you worry about your 4 year old. I worry when she is running a fever. I worry when she is laying around on the couch more than normal. I worry if she is making friends. I worry that she has awful separation anxiety when I leave her side. I worry about her like I worry about my other two daughters and exactly how you worry about every single one of your kids.
Here is the difference: My four year old, my sweet Alanna Kathleen, has an invisible and life threatening genetic heart arrhythmia. My own mother tragically died from undiagnosed Long QT Syndrome when I was only 3 months old. At age four, my mom was not symptomatic. She was a perfectly normal four year old, just like Alanna and just like me! I am also genetically positive for Long QT Syndrome Type 2 (LQT2).
From the outside looking in, most could never understand my constant fear and my constant state of exhaustion; as I am in her room numerous times a night just lurking as I watch her chest rise and fall. I do not do this “on purpose.” I do this quietly, without her knowing, without my other kids knowing, while my husband is fast asleep. I don’t want anyone else to be worried and I don’t want anyone else to feel the impending doom I feel most days.
I would love to tell you that I am positive all the time, that I just pray really hard, and that between my strong faith and her having amazing doctors, that I know she will be ok. Truth is, I don’t know that. Most days I don’t believe any of it. I am terrified every single day of losing her. Every single moment of some days, I am consumed by the thought that I could lose my baby.
A lot of you may think “Alanna will be fine. Besides an abnormal ECG, she doesn’t have any symptoms. She’s never passed out, never suffered a cardiac arrest, no PVCs caught on a holter monitor report.”
Well, let me tell you this: My mom became symptomatic around 9 years old. She was a seemingly healthy kid until then. She began having seizures which were actually cardiac events, her heart in v-fib, moments from death. By some miracle she lived to see her 18th birthday, shortly after giving birth to me.
Then there’s me: I became symptomatic after giving birth to my first child at age 24. I played competitive sports all through middle school and high school– guardian angel all those years working extra hard maybe? I have been classified as high risk. My QTc is long. I have suffered cardiac arrests. I have an implanted cardiac defibrillator (ICD). I am blessed to be here to watch my children grow up. I am blessed to be diagnosed and treated. I am blessed to have my daughter diagnosed and treated.
Yet I am literally holding my breath every single day, wondering when the shoe will drop, when will Alanna have her first event, when will I have to put this dreaded action plan into plan.
Think, Danielle. What will you do? What’s the plan?
Pray, Pray, Pray
I think it over in my head, often. Could I do it? Could I hold my emotions together and save my daughter’s life? Would my other children have to witness this? Would they then be traumatized? Will it happen when my husband is home or will I be on my own? Will they take her directly to CHOP (where her doctors are) or will I have to fight them because they want to take her somewhere closer? What will I do with the other kids? Will the neighbors be home to watch them until some else gets here? Will it happen in the middle of the night? Will I have time to put a bra on? Will it happen while I am in the shower and I’ll be riding in the back of the ambulance wrapped only in my bath towel? Will I even have time to run downstairs and unlock the door for the paramedics?
What will happen after we get to the hospital? Did I administer CPR in time? Did I do it right? Is she conscious? Is she back in normal sinus rhythm? How am I doing? I was recently diagnosed with PTSD from my own ICD shocks about 8 months ago. Can I handle anymore trauma? Can i stay strong for Alanna, for my other kids, for my husband? Can I do this? Like, can I really do this? Or will it happen while we are all sleeping– and it will it be too late?
Do I sound a little less crazy now– for staring at her rising and falling chest throughout the night?
Do I sound crazy? Maybe I do, or maybe just like a really worried and realistic mama bear? I don’t know what normal is anymore. I do know that if I am being honest, this consumes me. What makes it harder, no one else sees it. She appears normal. She does not have a terminal illness (praise the Lord). She is not suffering (praise the Lord). She has no physical signs that alert others that something is wrong with her.
These invisible and rare diseases exist and are real and they consume us mamas. They consume our every thought and every decision. They affect our marriages, or friendships, our careers, our other children’s lives and our own health. For all you other mamas struggling like me- know that you are not alone. I have spent 4 years pretending that I am just fine. Don’t get me wrong! I count my abundant blessings. I really really do. My heart hurts for the parents who have children who are suffering, who are terminally ill, who are missing, who have been abused. My heart hurts for all of them. What I have realized recently though, it is ok that my heart hurts for my own daughter, that my fears are real, are normal, and are ok to talk about.
If you would like to donate to SADS in honor of Alanna, you can do so here.
If you are interested in sharing your story on our blog, email us at firstname.lastname@example.org.