“Uh oh, it looks like you’ve got a breath-holder on your hands.” Those words came from the pediatric nurse who checked on our daughter, Rose, in our room at the hospital just hours after she was born. My husband and I really didn’t think much about it at all. We thought it was cute that when she got upset, she locked up and turned a little purple before she started crying. We had no idea what a terrifying, but harmless, experience we were in for.
The nurse really didn’t explain what she meant and we didn’t think much about Rose’s breath-holding for several months. As her personality began to develop though, her breath-holding became more pronounced. We mentioned it at one of her check-ups and our pediatrician explained that it could escalate into periods of unconsciousness, but not to worry that it was harmless and would correct itself with age.
By her first birthday it began to escalate. The more aware and the more frustrated she became, the more it escalated. One afternoon, about 3 months after her first birthday, we were hanging out at home and Rose got upset. David went to comfort her, as usual she went silent, turned purplish, and held her breath. This time was different though, very quickly following her eyes rolled back in her head, she went unconscious, her arms went rigid out in front of her, her hands curled up, her back arched and her legs jerked out spastically. I was standing close by, thank God, because David went weak in the knees while holding her and watching this unfold. I was able to hold onto both of them and stabilize them on their way to the floor. Within about 10 seconds of going unconscious she was back awake. Her first few breaths sounded scary and unstable, but within a minute or so she was awake, breathing steadily, and beginning to get her color back. She was very sleepy afterward and we were all emotionally wrecked.
I immediately made a frantic call to our pediatrician. I remembered what he had explained to us and I had read extensively about it since that time. Logically, I knew I should be calm and that everything was fine, but the mom in me was wildly upset at what I had just witnessed and needed some reassurance. He assured me that this was normal and that it was nothing more than “a good party trick”. It may sound like an insensitive thing to say, but our pediatrician was also my pediatrician growing up. My trust level with him is very high, and I respect a good calm highly experienced doctor more than anything. Those words were extremely helpful and would echo through my head after breath-holding spells for years to come….that’s right, years.
This may be a good time to explain that this is not a voluntary response from the child. For some reason every time I explain this to someone new they always ask if she’s doing it on purpose. Trust me, she is not. If you could see the awful look on her face right before she passes out, you’d know that this is not a malicious dramatic production. I wish I could include her perspective in this, but I can only guess that it is terrifying and she would like for it to stop just as much as we would.
We sat down with her preschool after her first seizure spell and explained Rose’s condition and gave them some information that I had printed out from the internet on what to expect. After that first seizure incident, it sort of snowballed and began to happen once a week or so. Then within six months it had escalated to a very challenging 3-4 times a day and the amount of time she would stay unconscious had increased as well.
It was incredibly trying for both David and I to see our sweet angel turn purple and have a small seizure every time she got upset. All of the information on breath-holding said things like: don’t treat them any differently than you would any other child. We really tried to stick to this as much as possible. However, we are almost neurotic about making sure she got plenty of sleep, wasn’t in overwhelming situations very often, and getting to her quickly when she got the least bit upset. We just tried to find ways to manage her stress level. Some people thought we were being too accommodating, but usually their first experience with witnessing a spell would fix that.
One afternoon I got a call from one of the directors of Rose’s preschool saying “The paramedics are on the way, but Rose is conscious again and breathing”. I’m sure she said a few things to me after that, but I don’t remember. I just remember arriving within minutes to find Rose’s sweet teacher surrounded by paramedics with Rose sitting up in her lap looking apprehensively at all of the strangers staring down at her. The teacher and I were both crying. I explained to the paramedics what her condition was, refused treatment, and checked Rose out of school and took her home with me. The paramedics gave her a little bunny rabbit and one of them had even had a child with breath-holding spells himself, so they understood I wasn’t insane.
Thank heaven that Rose is in a wonderful preschool, run by people that I trust and staffed with teachers that love and nurture Rose more than I ever thought possible. They made it very easy for us to handle the stress of that situation. Rose had passed out for what seemed like an inordinate amount of time to her teacher and she made the prudent decision to call for help. We sat down the following week with her teacher and the owners and just recapped the details of her condition and talked about acceptable criteria for her episodes and life just moved along fine. They have dealt with children with epilepsy before and were very calm about the whole ordeal. As all of this was playing out though, my mom made a comment about them possibly not accepting Rose back because she was now sort of falling into a special needs category. I literally didn’t sleep well all weekend thinking about that. I was relieved almost to the point of tears when the owners made it clear the following week that Rose was very welcome in their care. Another thing I remember about that whole episode is saying to her teacher “I never thought when I became a parent that these words would come out of my mouth, but when my child turns purple, passes out, and has a seizure: please try not to call the paramedics.”
After this, at her next pediatric appointment, I booked the appointment late and had to see someone new to fit Rose’s vaccination into the timeframe required. This new doctor looked panicked when I explained very calmly that her breath-holding spells had escalated and were now happening 3-4 times daily. He referred us to a pediatric neurologist.
I dreaded this appointment. Rose had to see a pediatric cardiologist for a murmur when she was just a few months old and I was so nervous about it that I had both my mother and my mother-in-law meet us at the appointment. This one was even worse. I really truly knew that she was perfectly fine and that this was just a precaution, but any referral when it is your baby is hard not to worry about. David and I both took her to the appointment and the doctor was sort of abrupt and difficult to understand. He asked if we could induce a spell during the appointment and that’s when David began to feel uncomfortable with the situation. Still, he gave Rose his cell phone to play with and abruptly took it away. This is something that usually upset her. She looked dejected but didn’t have a spell. I think we both knew that trying to get her to have a spell was an act of futility since she only usually did it when she was at home or school, but beyond that the doctor was unknowingly stirring a hornet’s nest of emotion in both of us.
Then he asked if he could put her out briefly and do an EEG (Electroencephalogram). The way he said “put her out” was so casual that I was easily agreeable, especially considering we would then know for sure that it was nothing more than breath-holding. David however, being Rose’s consummate protector, said “no”. We scheduled a follow-up appointment and left. I called our regular pediatrician, yet again, to ask for a referral to a different pediatric neurologist. I thought maybe if we found someone that could better explain things to us that we would all be more comfortable. He called me back when he got my message and basically said “Good gracious, she doesn’t need to see a pediatric neurologist at all. She has classic breath-holding, now relax and don’t worry about getting an EEG”. We cancelled our follow-up appointment and got back to normal life. Looking back I’m so grateful that David trusted his daddy instincts and we didn’t put her through anything unnecessary. I vowed from that point on to never discuss her breath-holding with anyone but our chosen pediatrician.
There were several incidents after this that stick out in my mind. One day she passed out in the middle of a big super store. I saw it coming and was able to get her to the inside of an aisle and hold her in my arms, as David provided a little cover for us with his body and the buggy. David and I both agreed early on that holding her in our arms, but crouching down close to the floor in case we lost our hold on her, was the safest way to deal with a spell. As she was turning purple and her eyes were rolling back in her head a family walked past us and saw what was going on. The mother looked panicked but we assured her that it was okay, perfectly normal, and nothing to get upset about. She looked like she wanted to report us to the authorities or a mental health facility for saying that, but just kept on walking.
Another time, we were at our church picnic and it was about an hour past Rose’s normal naptime. Something upset her at lunch as she was stuffing down Cheetos with her little orange tipped fingers and out she went in my arms. This was the first time that my brother, niece, and several of our church family members had witnessed an episode. We assured them we were all fine and took her home to get her nap. The following conversations with my brother and with two of our church members were incredibly reassuring to me. They were horrified at what they saw and amazed at our calmness. It made me feel so good to know that it looked every bit as scary as it felt to me and to know that our façade of calmness was actually convincing. It also stuck with my 5 year old niece more than I would have liked. The next time Rose cried in her presence she broke down in tears too. I think she’s always afraid she’s going to accidentally cause Rose to have a spell. She usually needs lots of hugs and reassurance that it’s not her fault if Rose gets upset around her. Coming back to our church family, who have been wonderfully supportive of us through this, leaving her in the nursery has always caused us a little trepidation. Luckily are in a very tightly knit church and we have a small team of nursery volunteers who all know about Rose’s issue and aren’t afraid to keep her anyway.
One of the funny things, really blessings, about this little condition is that it seems to only happen with people our daughter feels very comfortable with. As a result it has only happened a handful of times when she is outside of our care and it has always been with someone who is aware of it in advance. However, let me not make light of what it does to her grandparents and teachers when it does happen on their watch. There are often tears involved and lots of reassuring from us to Rose’s latest “victim”.
Another phase that was probably the most challenging of all was when she was newly 2. She went through a tantrum throwing phase. It was really difficult to discern when she was in danger of passing out and when she was just being rotten. Amazingly, David and I both knew her well enough at that point to make the distinction pretty quickly so that we could ignore her tantrums, but attend to her spells. Luckily, after ignoring just three or four tantrums they stopped. However before we were able to do that, she had one tantrum so bad (in public, of course) that she passed out multiple times. She kicked, hit, and screamed at both of us in the process. We finally got her to the car and she immediately fell asleep in her car seat. On the ride home we were so traumatized that we hardly said a word. The whole thing was over us not wanting to buy her a $10 rubber ducky in the gift shop of the hotel we were visiting. In the end, she went home with the rubber ducky. My girlfriends were a great help during the tantrum phase. Most of her behavior was 100% normal for a 2 year old and most of them had experienced similar ordeals. We just had a slightly more complicated decision making process before we reacted to her.
Another interesting thing that’s worth discussing are the reactions of both sets of Rose’s grandparents to this phenomenon. Both sets of grandparents are ridiculously doting and infatuated with Rose, as they are with all of their grandchildren. Rose also happens to have a very medically educated family, myself and my husband excluded. My father is an internist and my father-in-law is an orthodontist. Our mothers have both run their medical practices and are pretty medically aware as well. So communicating the details of this problem to them has been easy. At least intellectually they all understand the details, but emotionally it is a different story.
My father, as a seasoned and usually unshakable internist, has been wonderful at helping me stay calm about the whole thing and even he has consulted with a neurologist friend just to double check on some things. My mom, although she tries very hard to support us and stay calm, is secretly harboring major fears that something more is wrong with Rose and is always pushing me to revisit the issue with our doctor. I do always respect her wishes and bring it up at our next pediatric appointment, but I also always remind her that it is not entirely helpful to me for her to fall apart with worry after every spell. My mother-in-law has also been a little bit freaked out. As any woman would, she discussed the problem with a friend that told her that if we would just ignore Rose when it happened that it would just go away. Being that my mother-in-law and I are very close she immediately called me to share this little nugget. I really believe that she meant it to be helpful, but I reacted badly. I lost my temper a little and told her that if I ignored her granddaughter when it happened then she would be having a seizure on the floor with no assistance and that I for one could not live with that. Since then she’s come to a full understanding of the problem and has retracted that suggestion. Her continued prayers and support have been a wonderful comfort in the years since this early comment. Suffice it to say that any sensible adult who loves a child with all their heart will act a little nutty when anything threatens them, so be prepared for a bit of family drama no matter how intellectual or educated they may be.
My intention in writing this memoir was to help other parents dealing with this to not feel alone in their journey. The anxiety that this little harmless condition causes for parents and the children who have it is
serious. Yes, it gets easier. Yes, you can shake it off and get on with your day. Still though, every time it happens your heart aches at the expression on their face and you fight the urge to scream in frustration. The feelings of futility can overwhelm you.
The wonderful news is: it doesn’t hurt them at all. I know a few parents who have dealt with life threatening problems with their small children. I think of them every time Rose has a spell, literally. It helps me put this little blip on the radar in a healthy perspective.
In case you haven’t yet read the medical perspective on this condition: The Merck Manual definition for Breath-Holding Spells says….
A breath-holding spell is an episode in which the child stops breathing and loses consciousness for a short period immediately after a frightening or emotionally upsetting event or a painful experience. Breath-holding spells usually are triggered by physically painful or emotionally upsetting events. Typical symptoms include paleness, stoppage of breathing, loss of consciousness, and seizures. Tantrums may be prevented by distracting the child and avoiding situations that trigger the spells. Breath-holding spells occur in 5% of otherwise healthy children. They usually begin in the first year of life and peak at age 2. They disappear by age 4 in 50% of children and by age 8 in about 83% of children.
Breath-holding spells can take one of two forms.
The cyanotic form of breath-holding, which is most common, is initiated subconsciously by young children often as a component of a temper tantrum or in response to a scolding or other upsetting event. Episodes peak at about 2 years and are rare after 5 years. Typically, the child cries out (without necessarily being aware they are doing so), breathes out, and then stops breathing. Shortly afterward, the skin begins to turn blue, and the child becomes unconscious. A brief seizure may occur. After a few seconds, breathing resumes and normal skin color and consciousness return. It may be possible to interrupt the episode by placing a cold rag on the child's face when the spell begins. Despite the frightening nature of the episode, the parents must try to avoid reinforcing the initiating behavior. Parents should not avoid providing appropriate structure for children out of fear of causing spells. Distracting children and avoiding situations that lead to tantrums are the best ways of preventing and treating these spells. Cyanotic breath-holding spells respond to treatment with iron supplements, even when the child does not have iron-deficiency anemia, and to treatment for obstructive sleep apnea.
The pallid form typically follows a painful experience, such as falling and banging the head or being suddenly startled. The brain sends out a signal (via the vagus nerve) that severely slows the heart rate, causing loss of consciousness. Thus, in this form, the loss of consciousness and stoppage of breathing (which are both temporary) result from a nerve response to being startled that leads to slowing of the heart. The child stops breathing, rapidly loses consciousness, and becomes pale and limp. A seizure and incontinence may occur. The heart typically beats very slowly during a spell. After the spell, the heart speeds up again, breathing restarts, and consciousness returns without any treatment. Because this form is rare, further diagnostic evaluation and treatment may be needed if the spells occur often.
Last full review/revision February 2009 by Stephen Brian Sulkes, MD
I have read this definition and many more to the point of full memorization and often recite them to myself after a spell to get a handle on my nerves and avoid calling our doctor yet again in a panic. One of the things that always struck me as incongruent is that this problem occurs in 5% of children, yet I have never found a parent’s perspective on it in all of my internet searches. I do have two other friends of friends that have breath-holders that have been incredibly comforting to talk to, but like most moms we’ve never had time to really sit down and discuss the effects of it on our families, so I decided to write mine down.
Rose is now 2 and a half. She goes for months now without a breath-holding spell, but then they will pick up at times. For instance, for the past few weeks she’s passed out roughly every other day. The reality that we could be dealing with this until Rose is 8 years old or more is beginning to sink in. There’s just no way to know when they will end, but they happily are much less frequent than they were at their peak and our ability to cope has gotten much better.
So here are the things that I hope you take away from this memoir. Know that you’re not alone and it's going to be okay. Don’t feel silly for trying to manage your child's stress level and make sure they get adequate sleep. Educate yourself on the details and talk to a pediatrician that you trust, as often as you need to. Inform your child's care providers: teachers, church nursery workers, and grandparents. Also, keep them in the loop as things escalate and de-escalate. Reach out to friends and family and talk about it, but beware of their reactions. Ultimately, always follow your instincts as a parent in all the decisions you make.
There are, strangely, some wonderful skills that you’ll develop through this ordeal. My husband and I are a two man crisis team. We can spring into action at a moment’s notice and coordinate a calm reaction to just about anything now. Also, we are excellent battle pickers with Rose. We don’t squabble with her over the little stuff. Hopefully this will come in handy during her teenage years. So to those of you dealing with this, hang in there and try to keep things in perspective. Ultimately, you will all survive and you might even be a closer knit family as a result of it. To those of you just reading in interest, thanks for letting me vent.
