If you have reached this blog, you either know some one whose child is a breath holder, or you are a parent of a child who is a breath holder. Either way, it takes living with this condition to truly understand what breath holding is. In my experience, it has been the most terrifying thing I have had to deal with as a parent, and I have 3 kids.
Brayden's story starts moments after birth when he was being wiped down on the baby warmer. I remember him laying there crying like most babies do, then suddenly it was quiet. I noticed him turning purple, and the nurses working on getting him to breath again. The NICU team was called, but by the time they got there he was fine. In my memory of this day, the whole scene lasted a life time, but in reality, I'm sure it was a few seconds to a minute tops. Brayden was brought to the NICU for observation for maybe an hour and then released to the healthy baby nursery, and nothing more was said about this event.
Throughout the first year of Brayden's life he had moments like this where he would get so upset that he would stop breathing and turn blue. The preceding trigger was always typical of what a baby would get upset over, being hungry and me not making a bottle quick enough, as he got older and started getting around, it was him getting hurt, or getting upset over an interaction with his older brothers, or me simply sitting him on the floor. There was never any consistency of what triggered the event, so there was really never anyway of avoiding it from one day to the next. The episode was always the same. He let out a cry, stopped breathing, his mouth is wide open but no sound would come out, his face turns bluish purple. I would pick him up and try to comfort him simply by talking in a soothing voice saying, "come on Brayden, let it out, it's ok", and he would start breathing again. Simple stuff that never gave me cause for concern.
Everything changed September 11, 2011, days before he turned 14 mos old. My husband was upstairs changing his diaper, I was outside with our two older sons. When I came in my husband explained that Brayden became so upset during the diaper change that he cried, turned blue, rolled on his stomach and started shaking like he was having a seizure. I hadn't seen this episode, so I chalked it up to his regular routine (at this point we never heard the term "Breath Holding Spell), and him shaking was caused by maybe having a hard time rolling back over while trying to catch his breath. The very next morning I came down the steps holding Brayden, sat him on the floor, and what happened next still plays vividly in my head two months later. I sat Brayden on the floor so I could help his older brother (2yrs old) the rest of the way down the stairs. Brayden lets out a cry, he stops breathing, his mouth is wide open but no sound, terrified look in his eyes. I go to him and start rubbing his back saying "it's ok Brayden let it out". He tries to crawl away, but rolls onto his back and starts having seizure like movements. I pick him up and he gives me one last look as his eyes roll back into his head and his entire body goes limp in my arms. In that moment, I am holding my dead baby. I run to the phone to call 911 and as I am about to press talk on the phone I notice his eyes fluttering open and closed as he starts to come to. I hang up the phone and observe him, as he's coming around he is letting out weak cries and his eyes are glazed over, fixed and unfocused, and then they start darting back and forth. After a bit he tries to sit right up and get off my lap, but he is lethargic and tired and decided to just stay on my lap. I decide to call the pediatricians office instead. After explaining what just happened, and the nurse asks a few questions, she very nonchalantly tells me it's "just" a breath holding spell. She gives me all this information about the spells and statistics over the phone and I am in shock. How can this be nothing? How can something that looks like my child just died in my arms not be harmful to him? How can they hear this story and not even want to examine or run any tests on him? What if it's a misdiagnosis? What if it happens again? What if next time it
is fatal? What do I do to fix it? Every possible question and scenario runs through my head, and the anxiety sets in as I watch him like a hawk anticipating the next episode. As I watch him through the morning and afternoon, I notice he is very lethargic, and unsteady on his feet, and isn't eating well. I decide to take him to the emergency room in hopes of having tests run and a more definitive diagnosis that has a magical cure. However, after what seemed like an eternity of waiting, I am sent back to a room where a doctor comes in with a smile on his face, looks at my son and says, "hello, trouble". What?! After discussing the events of the day the doctor sends us home without any tests or suggestions for immediate follow-up, and only this advice...1) Don't try to avoid episodes by not allowing for him to get hurt or deal with stress, because not only is it impractical, but he will never learn how to cope, 2) if you see an episode coming on, lay him in a clear safe area so if he does have a seizure he doesn't get hurt, 3) If you see a change in his episodes i.e the severity, the behaviors, etc, bring him back, and most importantly 4) Don't pay too much attention to him during the episode because it can become a behavior. Still in shock, I leave the hospital and all I can think about is my poor son. He doesn't know what's happening to him, he is scared himself when he has an episode and I'm supposed to not pay too much attention to it?! This isn't sitting well with me at all, but I go home and get on with life.
Everyday, is a new norm. Now instead of just taking care of the kids, I am trying to protect Brayden, shelter him, against the doctors orders. It doesn't take long for me to realize that sheltering him and protecting him is as impractical as the doctor mentioned. I start doing my own research because this is not sitting well with me. I had never heard of it before, I don't know anyone who has heard of this before and what I see does not seem to be as simple as the doctors make it seem. There isn't much about BHS on the internet either. Yes there are several articles that give you the clinical explanation of a BHS, but like I try to tell people, reading about it and seeing it are two very different things. In my research I wasn't finding what I was looking for and one late night, it came to me...I want to "see" a breath holding spell to see if what I'm seeing is what everyone else is seeing. So, I took to youtube with little hope that some one was composed enough or had it in their right mind to get this on video. I was amazed at what I found. One youtube member had a video journal of her sons spells. I started watching the video's reading her posts about the time of day, the trigger if there was one and any part of the episode that may not have made to the video. While her journal was extremely helpful in knowing what a breath holding spell looked like, there was a scary similarity between her son's episodes and my son's episodes that always left me with a bad feeling in my gut. I went on to read that this child who was diagnosed with BHS's, went on to have a 90 min seizure which got him rushed to the hospital and intubated for 24 hrs. He was then diagnosed with RAS, Reflex Anoxic Seizures. The scariest part is his episodes looked exactly like my sons. This raises another question which I have yet to find an answer to...What is the difference between BHS & RAS? Obviously they are similar or else this persons son wouldn't have been misdiagnosed. I will share this answer as soon as I find out.
I continued to monitor Brayden, keeping a written journal of his episodes similar to the youtube video journal. At one point a saw a scary change in Brayden's episode. What started as seizure movements in his extremities became stiffening of the body, arching in his back, neck and head. One arm stiffened straight out the other arm curling like a claw into his chest. Now the seizure was coming over his head and upper body with some spasms in his leg. I immediately called the doctor, who had me bring him right in. He was fine, he looked fine, was acting fine. She had me schedule an appointment with a neurologist at CHOP, he underwent a 40 min EEG. Not having a severe episode during this test (he actually slept for about 20 mins of it), it came back normal. The neurologist told us everything was normal, read through some of my journal and sent us home telling us to return if there were any changes. A few days later he called back and said he wanted a follow up with a cardiologist because the frequency of the spells was abnormal and worrisome and he wanted to rule out and underlying heart problem. Brayden had a 24 hr heart monitoring. Not having any severe episodes during this test, it came back normal. So, I am back to dealing with this uneasy feeling in my stomach that something might be getting missed because he has not had a severe episode during a test. Not all of Brayden's spells are severe. He has simple BHS's everyday throughout the day. The severe one's come and go, and I don't know why, there are no answers. I stopped journaling his episodes for a while because I started to feel like it wasn't helping to get answers. Just recently I started to journal again because is severe spells have become more frequent and he has passed out at least once a day for the past four days. I think about taking him back to the doctor, but worry that he may be put through more torturous tests with no answers at the end.
It has been two months since Brayden's breath holding became severe, and while I'm a pro at handling the situation in the moment, I am a wreck in between spells. The anticipation of the next one, the worry that it will be worse than the last one, and the anxiety that this could be something more serious than breath holding is causing anxiety. I don't like to be away from him. I am going to school for nursing right now, and the anxiety is making school difficult to keep up with. No matter how simple doctors make this sound, and how much they tell you there is no need for concern, it is not enough. To see this happen to your child and not be able to fix it, is the worst feeling in the world. To have to experience what looks like the death of a child on a daily basis and then go on with life as if everything is fine, is so hard. Yet it seems that is what is expected of you since it's not a "serious medical condition".
I am not a doctor, so I can not give facts, statistics or medical advice. But I
am a compassionate, empathetic mother of a breath holder so I hope if you are reading this and are looking for support in an otherwise misunderstood, anxiety causing situation, you will find what you are looking for here. I will check on and update this blog often. Everyday is a new day. Yesterday may have been chock full of episodes both simple and severe, but today may be the day you are given a break. So I will take it day by day and hope you do the same.
Footnote: This blog may leave you thinking that my sons day is filled with stress and upset leaving him miserable and tearful. Brayden is a happy 16 month old boy who loves to play with his older brothers, dance and climb. He loves being outside and can put a huge smile on your face with just a simple smile from him. He is a perfectly healthy, normal 1yr old with BHS, and I couldn't love him more!
