Breath Holding Spells: One Family’s Story

Last updated on July 22nd, 2024 at 06:44 pm

When your child has a breath holding spell your world comes to a crashing halt…a tumor sized heat source goes straight to the base of your skull…all blood rushes behind your eyes… you feel a swell of infinite screams itching the back of your tongue… and you stop. What do you do in that instance?

From what my husband told me, all I kept saying was, “I need his vitals. I need his vitals.” As a hospital social worker, that’s all I could think. I needed to know his oxygen level and respirations. EMTs arrived just as my son started to slowly breathe again, looking droopy and dazed. All seemed fine, but we went to the ER anyways.

So what happened? Gideon went to bed with his twin sister for the night. He was overtired and couldn’t fall asleep. An hour into his whimpering and dozing, he let out two loud screams. I picked him up as he tensed and looked like he was screaming without sound. A “silent scream.” Face red. He then went limp and mouth turned blue. There was nothing blocking his airways. I took him out into the cold to trigger breath. Less than a minute later, which really felt like ten years, he came to… slowly… with color swelling back into his face… and both parents freaking out (to say the absolute least).

This is what the ER physician, pediatrician, and neurologist describes as a cyanotic Breath Holding Spell (“BHS”). The name, Breath Holding Spell, is a misnomer, since a BHS is different than when a child voluntarily holds his or her breath. According to the Child Neurology Foundation, these reflexive involuntary cessations of breath can happen to up to 5% of children and can start at a very early age. My son was six months. They are petrifying to watch, but true BHS cause no long term harm and can occur in typically healthy children. Dr. Francis DiMario Jr., a Connecticut-based pediatric neurologist, states that one does need to be cautious if BHS is actually something more than it is through further testing by a professional and rule out any other disorders.

Dr. DiMario shares that BHS documentation has been around since the 1600s. They could happen once in a child’s life to up to several times a day, and in almost all children, spells terminate by age seven. My son’s story is a typical outline of a classic cyanotic breath holding spell, and it all starts with a triggering emotion like fear or frustration.

There is no cure for a BHS diagnosis. Us parents cannot control our children’s emotions or avoid all scenarios where they may feel fear, pain, or frustration. I was so relieved to hear it was not a neurological concern like epilepsy. But I now chronically worry it might happen again. Any time he cries, my alarms go off. For the first week after the incident, I couldn’t sleep fearing he may stop breathing again.

What can be done is to provide counseling, education, resources and reassurance for parents. It is so traumatic to witness. Techniques on how to handle stress and cope with BHS will be beneficial. Parents may try to avoid spells at all costs. Even months after my son’s single episode, my heart skips a beat when I hear him cry or see him turn red and have flashes back to that terrible night. The key is to remain calm and not teach your child that you will yield to his demands at every cry, causing a behavioral change.

I never heard what this was before it happened to us. And once I did some research, had thorough hospital and doctor follow ups, and took time for myself, I started reaching out to hear what other moms experienced. I was surprised to find that many have experienced BHS in their families.

As the months have passed since our frightful night, my fear has subsided, but I am still learning how to fully function with this ever-present concern. I’m less jumpy and sleep a bit easier now after time, cuddles, and new-found awareness. I know he is OK. It could happen again. It could never happen again. I try to not enable his tears by always picking him up… even though I want to. I go about normalcy as best I can and give love to his twin sister also. I cannot protect either of them from all bumps or scares or pains in this world, but I now know we can weather some storms from this experience.

For more information on Breath Holding Spells please visit The Child Neurology Foundation.

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