I am constantly going on about how frequent night-waking (especially for breastfed children) is normal. The biocultural and biological norm. However I do also talk about how there are many different reasons that a baby’s night-waking could be deemed “abnormal”. Regardless of what is happening culturally around the child or what human babies do naturally, there will of course be situations where a baby is waking frequently because of a health concern. This is what Sarah realised with her little boy as time went on. So many symptoms that something just was not right and was outside what we’d normally expect for night-waking. While there are different causes of “abnormal” waking (for instance food intolerances or allergies), Sarah’s baby Henry ended up being diagnosed with sleep apnoea after a LONG, exhausting and frustrating journey towards answers. Her baby was waking frequently to breastfeed, not because he was just a normal wakeful baby wanting breastfeeds…but because he was actually having trouble breathing! As Sarah described it was not just that it was frequent waking, “Because frequent just doesn’t get it across. He would sometimes only sleep for a few minutes. Sometimes for 2 hours. A common night was between 10-15 wakes from when he was put down. He never had a nap in the day unless he was pushed in the buggy. I wore him in a sling constantly to help him sleep…”
Sleep apnoea is a sleeping disorder where breathing repeatedly stops and starts throughout the night. While this sounds so scary and like something that should be quickly and easily diagnosed, unfortunately for Sarah and Henry this was not the case. Doctors told her he had a dairy allergy or that he needed “filling up” and were suggesting formula! It was also recommended to her to give him porridge in a bottle before bed! This is a PERFECT example of why people like me (lactation consultants) are SO frustrated and flabbergasted by the over-use of formula and this idea of “filling” babies up to decrease night feeds which squash normal infant behaviour and ignore what is actually going on in some cases…a medical condition. The recommendations to just “formula feed and fill up” are rife throughout many Western cultures. Sarah is very grateful to have been able to breastfeed Henry throughout their ordeal and explain in detail how it helped Henry (I’ll get to more on that later!)
From the start Sarah knew something was wrong but could not figure out was going on. She listed a whole series of symptoms that Henry was showing, these included:
- From day 1 would arch his head and bend it back at the neck to help open his airway, including when sleeping.
- Sarah said Henry would, “Wake with a ‘start’ and crying in a very upset manner. Again, every time. Not waking ‘naturally’ looking for food. I wouldn’t have thought this was odd if I was a first time mamma. Basically he never woke when he was hungry because he already woke with a sleep apnoea and I fed him to calm him. This way of waking also meant that no amount of patting, shushing or ignoring (don’t get me started on those people who told me to close the door and ignore him – potentially life threatening for babies with sleep apnoea!!) would help. He had to be picked up and rocked or b/f to calm. Towards the end, only b/f would calm him. And it would be an hour to feed to calm”.
- Clicking when breathing. Like a valve click. Hard to describe.
- Snoring like a drunk!
- ‘Darth Vader’ breathing. Day and night. Awake or asleep.
- Catching of breath with the clicking. As if the air was just stopped and trapped.
- Indents under the rib cage. This is due to poor oxygen levels. We have seen it in our daughter when she has asthma so people may recognise it from that.
- Constant cold and runny nose (to do with the infection fighting function of the adenoids and tonsils).
Stopping breathing. For longer than 10 seconds – then screaming/crying awake.
- Disturbed sleep – see above!
- While breastfeeding- often fussing at the breast. Coming on and off. I now realise this was because he couldn’t breathe through his nose. So similar behaviour to when they have a proper cold.
It took 8 months before Henry was admitted into a sleep clinic and a proper diagnosis was done. After spending a night at the clinic they were sent to an ENT. Sarah explained, ” We were referred to an ENT specialist. They put a camera up his nose which showed the offending adenoids COMPLETELY blocking the airways. He was referred for surgery, as it was carried out, they found that his tonsils were also enlarged so they got taken out too.”
Throughout the she was told to give him formula, fill a bottle with rice cereal before bed, try to get him sleeping through the night…however Sarah and her husband listened to their instincts and knew that formula and rice cereal were not the answer. Sarah said, “We didn’t ever give formula because I knew in my heart that there was something wrong. He wasn’t hungry!! He wasn’t ‘trouble’! He was in obvious pain or scared when he woke up. We were told at one point to give him formula that was cow’s milk protein-free during the milk allergy testing phase. It still sits in he cupboard unopened. Both my husband and I felt that was not right for any of us and if we’d switched it would have made zero difference! And they described the formula as pretty horrible tasting ‘but he’d get used to it’.”
Sarah identified breastfeeding as being so helpful throughout…both pre and post surgery! Sarah wrote:
- Breastfeeding was the ONLY comfort he has had that has physically helped to alleviate the stress of he sleep apnoea.
- Some nights he had been attached to me for hours on end helping to calm down and manage the apnoea.
- Post surgery – breastfeeding indicated to the doctors that his airways were clear and no problems eating. Aided in helping him off the iv sooner.
- Comfort!!!! As I could see the monitors, nurses confirmed his vitals stabilised when I was able to breastfeed him in recovery.
- 24+ hours post surgery – he had fed normally and continued to even though he couldn’t take solids very well because of the pain.
- He was finally coming off the breast naturally after feeding!
One thing that really stood out to me from Sarah’s story was something she mentioned almost as an afterthought…”Being listened to and supported by health care professionals was PARAMOUNT. And also listening to MYSELF! I could have been persuaded to give him formula if I hadn’t listened to my instincts. Formula would have made zero difference ‘to help him sleep!’ – as you know. But easily a tied and frustrated mamma may have given in and it would have been in vain.” Sarah knew in her heart that formula, rice cereal and withholding night-feeds was NOT the answer for her son. Instead she found doctors who listened to her and followed her motherly instincts on what was best for her child.
If you suspect that your child’s night-waking is NOT normal, due to a medical condition or possible food intolerances, seek help from an International Board Certified Lactation Consultant while also working with your GP or specialist. Continuing to breastfeeding during these times is not only important to both mother and child but can help pre and post surgery for many different reasons. Sarah said Henry is now 19 months old, still breastfeeding and finally, sleeping through the night, “It has been a long old journey but finally he is getting the much needed sleep he needs”.
Remember, breastfeeding is not just about the milk but also brings comfort and security to the child while encouraging optimal recovery following surgery. In most cases breastfeeding can continue while you work through the diagnosis process.