I’ve never known what heartbreak was until I thought my daughter was gone.
Last week was a day like any other. I stayed at home during the day, hanging out with Eisley and making sure everything was ready to go for Taco Tuesday. We ate dinner and went and put away Eisley’s laundry and hung out and organized her room.
We came downstairs and set Eisley on the floor to play and she crawled over to us on the couch, like she had a million times before. She crawled and set herself up on our legs. Just like a million times before. And she let herself down and scratched herself and instantly started crying. The cry where she holds her breath. The cry she’s had time to time since literally our first day in the hospital. She’s cried that way on other occasions when she was tired and bumped herself. I scooped her up. She was still crying and unable to breath so I blew in her face, a trick that had snapped her out of the tears time and time again. I didn’t work this time. I looked at Andrew terrified and handed her to him where he tried with no avail to get her to breath.
She was turning blue.
I scrambled for my phone, my palms clammy, I struggled with shaking hands to dial 911. I turn my head to Andrew who is now standing with Eisley and I watch her go to take a breath and then like that her body went limp. I watched her eyes glaze over, her lips purple and her body completely limp. Ringing took over my ears as Andrew in a terrified voice holds our lifeless daugher, crying her name. My ears are ringing so hard I can barely cry out our address to the woman on the phone as I sit on the floor in our mudroom sobbing. Not even remembering how old my own daughter was when she asked because I couldn’t stop thinking how my daughter was gone. I couldn’t breath. I couldn’t think.
And then I heard her cry. Andrew runs around the corner with her bouncing her in his arms.
“She’s breathing! Shhhh shhh, it’s okay Eisley. Shhhhh. She’s breathing.”
I still can’t move. I finally run to the door when the police and EMT’s arrive (within a minute of my call, thank GOD). They were so kind to us and took Eisley’s vitals. She bats her eyelashes and smiles at all 7 of the police and EMT’s now sitting in our living room like nothing is wrong. And nothing is. Her vitals are perfect. What? I don’t believe something isn’t wrong with my daughter. Children don’t lose consciousness for no reason. It just doesn’t happen. Following this we head to the hospital where her vitals are AGAIN perfect and Eisley, after some discussion with the doctor is diagnosed with BHS.
There are a lot of false perceptions about what BHS. BHS stands for breath holding spells. THEY ARE TOTALLY INVOLUNTARY. Eisley is unable to control the spells and the fact that she can’t breath due to issues within the autonomic nervous system. She doesn’t do it for attention. All of Eisley’s spells have been triggered by pain big or small. The cries that are normal and end quickly for most kids are extended because of the spells and are totally out of her control. It’s terrifying and though it is INCREDIBLY common, most people have never heard of it. 5% of children in the US have BHS while only 1% have autism yet this is probably the first time you have ever heard of involuntary breath holding spells. There isn’t much known about BHS so other than an iron test to check for deficiency (which can make spells more extreme or frequent) there isn’t much you can do to ‘fix it’. You have to wait until your child grows older and their bodies learn how to overcome the nervous system’s response to slow the heart and stop breathing.
Seeing my daughter lifeless has changed me. In a handful of ways. It has strengthened me and weakened me at the same time and I’m still having trouble dealing with that. I will tell you what though, my plan is to spread awareness for BHS so that people KNOW. So many parents are told this is normal and to just let their child deal with it until they grow out of it but there is SO much more to it than that. I have found some comfort in a group of other parents who have children who suffer with BHS and they and now we have found different things that have seemed to help them and like Andrew and I, they want to work to find something that will help our children lessen the frequency or stop these spells entirely. I want to help other parents in the future to not have to go through what we went through and may very well continue to go through until we find something that stops this. But until then, awareness is the first step. If you have ANY questions or think your child may be going through this as well and would like resources, don’t hesitate to email me at firstname.lastname@example.org .
More info on BHS HERE.