How Co-Sleeping Saved My Baby: Apnea and SIDS

Rare photo of Iris sleeping

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 here, Central Apnea.

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 up to ten 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?

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. Her apneas were usually very short but they were so frequent that her sleep study at 8months did show low blood oxygen.

From a newborn age I knew she was stopping breathing for periods of time because I was co-sleeping with her and very aware of her breathing. 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, this child has never slept soundly.

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 next 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 apneas.)

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. Central Apnea. 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 we had a girl who woke so frequently and why we still have a child who when her breathing is already hampered by a respiratory infection might wake up to every 20 minutes.

We can read a zillion 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 know the diagnosis for a very long time. 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 baby 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. I doubted this for a long time until I read the evidence because I feared it would prove right the non-breastfeeding, non-co-sleeping naysayers who said our baby’s sleep waking was my fault. But crib sleeping didn’t “feel” safe. And for us, as it turned out, it wasn’t.

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. If we have a ton of oxygen, our lungs do not need to work so hard. 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. There is no strain With multiple medical tests including ultrasound of brain and MRI, there was nothing that showed my daughter’s brain to be different. 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 further studies were 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 vaccination schedule, .

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 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.

Should newborn babies be tested for apnea in order to prevent some cases of SIDS? Hmm, maybe. Should families be encouraged to co-sleep and breastfeed because it does literally prevent SIDS (SIDS is by definition a “crib death”) ?  I say: Yes.