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 but 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. Truthfully, every client who has gone in has been given the diagnosis of sleep apnea in some combination of central and obstructive. Is this because all babies have periodic breathing (starts and stops) in sleep to some extent? Do they all have some apnea? Is some amount of apnea normal in a way?  I have not been able to get a sleep specialist to show me what a “normal” infant overnight sleep study graph looks like for comparison. 

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. In premature babies, central apnea is called “apnea of prematurity”. 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.

There is no body of evidence proving SIDS could be related to central apnea, but there are many doctors who theorize this could be the answer or a partial answer. Lately there have been a handful of researchers with varied theories on the cause of SIDS but nothing yet proven.

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 with a surgery. Iris wasn’t premature but she never slept longer than an hour at a time and she always woke up gasping for breath and then crying. As it turns out, some brains take longer to develop proper sleep-breathing regulation.  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? Ten percent is a large number. 

More of Our Sleep Story:

I thought Iris was having normal newborn behavior but as we reached 6 months of sleeping for an hour at a time, I felt something was wrong. I was also told it was wrong. I didn’t have anyone around me with a baby that woke this much. I thought I was doing everything right. I had worked with babies all my life. 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 had a few methods I knew, like the No Cry Sleep Solution’s “Pantley Pull-Off” and some new ones but I avoided any cry-it-out methods- they weren’t right for us.  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. There was literally no variable that would change her sleep length. 

For months I either told myself that her pauses in breathing were normal, even though it wasn’t what I had experienced with other children. Intuitively I knew she was having to wake up to breathe and everyone told me I was crazy. We co-slept so I could hear her stop breathing and then I could feel her eventually startle awake again and cry. Her apneas were usually very short but they were so frequent that her sleep study at 8 months did show low blood oxygen levels.

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 continued co-sleeping 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. But Iris also had want I recognize now as a strong oral sleep association. She was falling asleep on the breast. This does cause babies to wake frequently to nurse again rather than rolling over into another sleep cycle. The doctors who told me she had central apnea said she would outgrow the apnea but that if I wanted a bit better sleep now, I needed to let her Cry-It-Out and not feed her at night. 

In fact, by the time I felt done with doctors, we had seen 4 sleep specialists who told us to do Cry-It-Out. What I heard was “Your child has a medical challenge but we think you should treat it as a behavioral issue.” 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 she woke, for the sake of our own sleep. I couldn’t do it. 

And I set out 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 and how bad the oxygen desaturation would be. (I wondered if SIDS babies were getting lost in these numbers). 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 for my kid who had a strong oral sleep association. It is understood that the main mechanism to prevent breathing disaster is the body’s ability to finally wake up during one of these pauses. 

My daughter outgrew her Central Apnea by about 2.5 years but I had started sleeping long before that. I was going mommy bonkers in sleep depravation and  I had decided I couldn’t wait for “some day” when she would grow out of it and so I set out to figure out if there were other ways to help her sleep. I had to become my own attachment-friendly sleep guru because I couldn’t find her!  It had been long enough that I was sure she wouldn’t die of central apnea and I finally felt comfortable helping her with some gentle sleep learning with my presence. I didn’t want to leave the room. So I spent a segment of time between 14 and 18 months slowly and gently by first weaning her of needing my boob in her mouth to get her back to sleep a then of her needing me to be in the room in order for her to sleep. She woke less frequently and it was probably a combo of ending some challenging back-to-sleep associations and her brain just maturing.  

So, yes I did the important work of ending the sleep associations that might be no big deal for some families but which were not helping us in any way. And then I became a the lullabye lady and created the Sleep Savvy method for attachment-minded breastfeeding, crib or bed-sharing families. And I really began to wonder about apnea SIDS. 

Just One Theory on Apnea and SIDS

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 SIDS 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). I was so thrilled when the AAP first came out with the recommendation that babies room-share in the parent’s room. 

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. Humans are not nesting animals, our babies were designed to be with us at all times. 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 safest for my own baby.

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 may have totally missed that as a possible cause. In an Ultrasound of brain and MRI, there was nothing that showed my daughter’s brain to be different from a child without apnea. 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 a huge shame that we have not saved more babies! What if a study led us to be able to say, “Co-sleeping and breastfeeding together are 99percent effective against SIDS in a safer sleep environment”   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 and sup-optimal nutrition. 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 apnea and control co-sleeping and non-cosleeping babies, and formula versus breastmilk. 

Note that when we talk about SIDS, we are not talking about the smothering and roll-over that are the dangers of improper bed-sharing. Those deaths have names and causes. SIDS had no cause and is found in crib-sleeping infants. 

I wish the legendary Dr. Ferber (with his Controlled Crying 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 need to be many more studies 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 evolution, 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. What about homebirthed babies? Seems like we should be instead just encouraging parents to do the things we know are protective. Should breastfeeding mamas be encouraged to co-sleep and be taught how to do so safely- 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 touching them, some mamas cannot breastfeed. I just think we need to have a much better assessment of everyone’s benefits risks and I truly believe that my instincts to bedshare and to breastfeed saved my daughter’s life. 

If you need me, I’ll be helping families sleep over here. 

P.s. When I share my story, the other central apnea moms find me and ask “when will it end?”. Between 18mo and 3 years for most folks. I didn’t believe the docs, but they do mature as long as the child is otherwise healthy. Here she was at 3 and sleeping through the night for a year already. 

 

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