Up to 10 percent of children are thought to have an undiagnosed sleep disorder. Sleep disorders range from restless legs syndrome to circadian rhythm disorders to obstructive apnea and what I’m talking about in this blog, Central Apnea. Many of my sleep clients wonder if their child has a sleep disorder, and having been there, I help them look for the signs and get a sleep study if needed.
Central Apnea is why premature or ill babies are on apnea monitors in the hospital and it is why some babies go home with apnea monitors. The central nervous system (brain) is not well-developed or regulated and can “forget” to breathe properly during sleep. But central apnea (called Apnea of Infancy in babies) can effect a baby all the way until 2 years or more and it isn’t always preemies. Bear with me, this is going to be about co-sleeping and SIDS.
I know about central apnea because my daughter was diagnosed with it at 7 months old. We were hoping for obstructive apnea which would have been easier to fix. Iris wasn’t premature but she never slept longer than an hour at a time. As it turns out, some brains take longer to develop proper sleep-breathing regulation and it isn’t only preemies. If sleep specialists estimate that more than 10 percent of children have an undiagnosed sleep disorder- maybe these sleep-breathing or night-waking problems so many of us have are really…kinda normal? It is an interesting question.
I thought Iris was having normal newborn behavior but as we reached 6 months of sleeping for an hour at a time, I knew something was wrong. I was very confused. As a postpartum doula and infant nanny, I had help many children learn to sleep well and I had never seen any of them wake every hour. I knew every trick. I tried everything but cry it out and even when I let her cry a little bit, there was no change. If she was extremely upset or ill and had been crying- sleep did not get any better.
For months I either told myself that periodic breathing was normal or that it wasn’t happening. I told myself, “she’s just sleeping so deeply, I can’t hear or feel her.” But that was a joke, my child had never slept soundly. Intuitively I knew she was having to wake up to breathe. We co-slept so I could hear her stop and then I could feel her startle awake again and cry. Her apneas were usually very short but they were so frequent that her sleep study at 8months did show low blood oxygen.
There really were only a small handful of times that I thought Iris was in danger and looked grayish and that it had been more than ten seconds since I’d noticed no breathing. Those times I woke her myself if I thought she wasn’t breathing- simply by leaning close and breathing into to her face and she would gasp and start crying. So we co-slept and I breathed on her all night, and she woke constantly all night (and because of all of the waking, we had her tested for various sleep apneas.
In fact, by the time I felt done with doctors, we had seen 4 sleep specialists and had two overnight sleep studies. The first doctor diagnosed Iris with central sleep apnea- something he hoped she would grow out of. He refused to treat her with c-pap, caffeine therapy or carbon dioxide therapy treatments I had researched because the We were told she would likely grow out of it sometime, and in the meantime, Cry It Out might help. So each doctor told us that though our child definitely had a medical disorder that caused her to wake frequently and frightened, we should let her Cry It Out each time, for the sake of our sleep.
That set me on the journey of a lifetime. I re-read every sleep book. I collected and read every study on infant and child sleep. I learned that all young babies (and even adults) can have 15-20 second pauses between breathing while asleep. The trick is whether or not the child is able to come out of it and how quickly. The verdict was out as to whether all of that waking is a central or obstructive apnea or if it is a normal brain function. It is understood that the main mechanism to prevent breathing disaster is the body’s ability to wake up during one of these pauses. This is why I had a girl who woke so frequently and why I still have a child who wakes frequently when her breathing is already hampered by a respiratory infection. She has mostly grown out of the Central Apnea. And I also spent a segment of time between 14 and 18 months slowly and gently weaning Iris off of the other sleep associations that were troubling us namely stuffing the boob in her mouth to get her back to sleep a without me absolutely having to be in the room in order for her to sleep. As the apnea eased a bit and I was sure she wouldn’t die of it, I finally felt comfortable helping her with some gentle sleep learning with my presence.
There are some studies about a “correlation” of Apnea and SIDS and other studies which simply believed that a child with Apnea was more susceptible to SIDS. But most parents of non-preemie children with Apnea do not find the diagnosis right away. Many families go through multiple life threatening events where the baby is found gray or blue in a crib without getting any medical help and so do wind up with a child on an apnea monitor. (We know this from the SIDS stories. Many parents report previous breathing issues with sleep.) And I personally worry that with children with undiagnosed central apnea who consistently sleep in a separate room might have some apnea episodes they come out of on their own that nobody notices and then eventually one fatal accident (SIDS).
Dr. Tom Keens at Children’s Hospital, Los Angeles has said on the SIDS Network:
“One THEORY about SIDS is that all babies have respiratory pauses during sleep, which can last up to 15-20 seconds. This appears to be normal. The question arises how babies ‘rescue’ themselves from these breathing pauses. One hypothesis is that waking up, or arousal from sleep, is an important defense mechanism we all have to protect us from potentially dangerous situations during sleep. The THEORY would suggest that babies have many breathing pauses. However, if they do not arouse in response to one of them, they might not be able to get out of the apnea, and this could cause death. Personally, our group has done a fair amount of research on arousal in infants, and I BELIEVE that it might be important with respect to SIDS. However, this has not been proven.”
Obviously, much more research must be done, especially on how infants “revive themselves” after apnea events. Maybe infants shouldn’t be left to revive themselves at all. There really isn’t much human newborn can do for itself in any other area. When studying prone sleep position, researchers found that future SIDS victims had less arousability when sleeping. And I do know one thing: breastfeeding, co-sleeping babies are more easily roused and don’t sleep as deeply. The same is true for their parents. I doubted this for a long time until I read the evidence because I feared it would prove right the anti-breastfeeding, anti-co-sleeping naysayers who said our baby’s sleep waking was simply fault. But crib sleeping didn’t “feel” safe. And for us, as it turned out, a crib wouldn’t have been.
When we talk about arousals from sleep, and prevention of apneas, we talk about carbon dioxide. Breathing in carbon dioxide (say, from a sleeping parent?) is what stimulates human breathing- our brains noticing carbon dioxide in the blood stream actually drives us to breathe regularly. If we have a ton of oxygen, our lungs do not need to work so hard and theoretically might work sluggishly. Adult patients with old-age or heart/brain injury induced central apnea are treated with carbon dioxide! A minuscule amount of extra carbon dioxide can prevent long apnea attacks in adults and premature infants.
In autopsies from SIDS deaths, they find that breathing has stopped, but they do not find a cause. Central Apnea as sole cause of death is not something that can be found by autopsy and so I fear we miss those causes. With a death from central apnea, there is no tests that reveal central apnea. In an Ultrasound of brain and MRI, there was nothing that showed my daughter’s brain to be different. I was told that central apnea was an immaturity of the brain stem but that it was very hard to detect. In fact, many autopsies of SIDS victims show minute differences in the brain stem (central apnea) or respiratory system (obstructive apnea) but apnea is not ruled cause of death and is simply called “SIDS.”
Medicine is failing families by not finding cause and prevention of SIDS. What if a study led us to be able to say, “Co-sleeping and breastfeeding together are 99percent effective against SIDS” SIDS would no longer be this mysterious sudden infant death, it would be a lethal combination of central apnea (something which matures over time) and sub-optimal sleep conditions. Finding out more about apneas and sleep deaths would involve sleep studies of random babies at various ages while co-sleeping and crib-sleeping and comparing many factors including sleep factors for the parents, sleep studies of apneic and control co-sleeping and non-cosleeping babies, formula versus breastmilk, vaccination schedule (since the age of the largest amount of first vaccines correlates to the age of the greatest risk for SIDS), stress level of the parents substance usage by the parents and much more.
I wish the legendary Dr. Ferber (with his Cry It Out method of sleep training) at his sleep institute would concentrate his work and funding on something important like this, something that would save lives instead of injure brains. Fortunately, Dr. James McKenna is doing some great work and I hope central apnea will factor into his work in the future. There needs to be a study like this one on co-sleeping and arousability.
I guess I just don’t believe in a mysterious thing that kills babies with no cause. I have friends who lost a child to SIDS and I know they would also like an answer. I want to trust that by either evolution or creation, our otherwise healthy babies are born to breathe and live. It seems that the more frequent waking and nursing that co-sleeping babies do might be actually adaptive, rather than maladaptive (yet a pain in our butts, for sure!)
Should newborn babies be tested for apnea in order to prevent some cases of SIDS? Hmm, maybe. Should breastfeeding mamas be encouraged to co-sleep because might literally prevent SIDS (SIDS is by definition a “crib death”) ? I say: Yes. Breastfeeding and Co-sleeping don’t work for everyone. Some mamas cannot sleep with a baby on them, some mamas cannot breastfeed. I just think we need to have a better assessment of everyone’s risks.
For more information on the actual risks for SIDS deaths and politics surrounding, read here: https://mamalady.wordpress.com/2011/11/17/black-and-white-race-and-the-co-sleeping-wars/#comments
If you need me, I’ll be helping families here: http://www.SavvyParentingSupport.com
Rare photo of Iris sleeping! (Note, animals are for the photo, never let your infant sleep with this many stuffies).