Baby Led Weaning and Down syndrome – why we chose to do it, and how we made it work.
I’m going to kick this off with a disclaimer (what fun!): I am not a health professional, and this is not medical advice. I am a mum, and a bit of a science nerd. Where there are things to learn, alternatives to the mainstream and multiple options available – I like to hunt out information and remain open minded until I am satisfied that I know enough about all the options to make an informed decision. I have created this post with the intention of helping other parents make an informed decision about introducing solids to their child with Down syndrome.
So what is this “Baby-Led-Weaning”? What does this all mean?
Baby Led Weaning (BLW) is a method of introducing solids and has nothing to do with weaning an infant off milk. It involves skipping spoon fed purees and mush and going straight to putting whole family foods in front of your baby. There is no spoon feeding and the babies feed themselves. Initially this means sticks of whole foods like veges and fruits, and very quickly moves to baby eating everything the rest of the family eats (with a few exceptions). BLW first teaches the child to chew solid food, with swallowing being a natural progression on from this. In comparison, traditional weaning with purees first teaches the child to swallow non-milk foods, with chewing being introduced slowly and gradually over time.
Why choose BLW? At its core BLW works on the idea that babies are born with the ability to regulate their own food intake, and instinctively know when they are full. The theory is that allowing self feeding of solids maintains this self-regulation ability into adulthood, and thus helps minimise the risk of habitual overeating that so many of us are prone to. Self regulation is how breastfeeding on demand works, and why it is impossible to over-feed an exclusively breastfed baby. BLW is a perfect extension of demand breastfeeding (and similarly, paced bottle feeding) as it continues to give the child control over their own food intake.
In addition to this, BLW is brilliant for children with Down syndrome as it allows meal times to become therapy time. This post by Carole Maisel (a paediatric OT), while not strictly about BLW, details how self feeding is beneficial to development. It also touches on how self feeding can help prevent the food aversions that many of our children develop. Food aversions in children are related to texture, not taste. As BLW does not involve blending foods into a puree children do not become accustomed to food being a simple, uniform texture. BLW allows and encourages physical exploration of the textures and flavours as the child learns to chew first, and then to swallow their food. It is believed that this leads to less texture-related food aversions as children are given the opportunity to become accustomed to the feel of the food in their hands first.
I am sure at this point you are wondering why you can’t do ‘a bit of both’, meaning traditional weaning with purees, and finger foods on the side. The fact is that you can, if you feel that that is what is best for your child. HOWEVER, should you choose to take a ‘bit of both’ approach PLEASE exercise caution. If you have been feeding your child purees for a month and she has learnt to swallow solids without chewing, and then you hand her pieces of whole intact food she may attempt to swallow these without chewing. This is why traditional weaning follows a gradual introduction, as attempting to swallow larger chunks of food poses a choking risk. Obviously some babies can accommodate this with no problems at all, however for safety’s sake please be aware and watch your child extremely carefully. If you have a little one who is new to solids and plan to do a full transition to BLW then it is recommended that you cease all solids for about 4 weeks and then start again. For more information about about BLW please visit Gill Rapley’s website. For more information about switching from traditional weaning to BLW I recommend Rapley’s BLW book. ( Please note: I am not affiliated with Gill Rapley in any way.)
Sharing our experiences.
Through different interactions on Facebook I have had several requests for a post about Baby Led Weaning, and how this worked for our daughter with Down syndrome, Elva. It is the method we used to introduce solid food to our older daughter Aurora, so as we approached the time to introduce solid food to Elva I started to look into the logistics of using the method with a child with Down syndrome. What I found wasn’t overly helpful. There is a Paediatric Speech Pathologist and IBCLC called Jill Rabin who gave a lecture on the subject in 2014 (the accompanying slide show can be found here), but aside from that the internet is just full of mothers asking the same questions I was. Many of these mothers were being told that their babies would need to be spoon fed purees purely because they had Down syndrome. Like many things I have come across regarding Down syndrome, there seems to be a misconception amongst far too many health care professionals that individuals with Down syndrome are universally incapable. As we all know this is a load of nonsense and each individual with Down syndrome has their own strengths and weaknesses, just like every other member of the population. At some point while feeling frustrated at all the stereotyping I realised I was approaching the issue the wrong way. Instead of looking around for someone to tell me what Elva could and couldn’t do – I needed to look to HER.
Letting Elva lead has been our approach for many other things but for some reason it was lost on me with this. This is particularly ironic as BLW is all about watching for your baby’s cues, so I was really missing the point! We already knew that Elva was interested in the eating process, but when we stopped to really watch her behaviour it became clear that she was getting cross at being left out of the food part of meal times. At this point she was 7 months old, or about 5 1/2 months corrected, which was when Rory started BLW. What I noted was that while Elva may have been interested, she wasn’t sitting at all, still had significant tongue thrust, and was far from developing a pincer grip. Her palmer grip was still in the works and she certainly wasn’t trying to swipe food off our plates!
I was conflicted. These things are all considered pretty crucial markers for readiness for solids. Was this a case of her body not keeping up with her mind and what her mind wanted to do? If that was the case, did that mean that her gut wasn’t ready as well? For a typically developing child the answers are fairly straight forward – wait until the child is showing the signs of readiness – however for a child with Down syndrome some of those signs of readiness (like the cessation of the tongue thrust reflex) might not eventuate for years, or ever. It becomes a matter of the parent determining when their child is ready. How do you do this? Familiarise yourself with the specifics of BLW, head to your local library or book store and get your mitts on a copy of Gill Rapley’s book as linked above, join Facebook groups and speak with other parents, gather as much information as you can – and then let your baby lead you.
Given Elva’s existing gut issues I was really reluctant to take too many risks with her. Over the next few weeks we waited and watched. During that time she started to sit with just a little support in a high chair and began properly grasping items with her palmer grasp. I started to feel that now was the time, so at 8 months or about 6 1/2 months corrected we made the decision to follow our instincts and take the plunge.
Modifying Baby Led Weaning for the child with Down syndrome.
For our older daughter meal times were simple. Initially we placed sticks of veges on her highchair tray and let her have at it, and she quickly progressed to sharing everything we were eating. But for Elva it was not that simple. Initially she was not capable of picking up the food and guiding it into her mouth. With the principles of BLW in mind we started with cucumber sticks and provided our hands as tools. By holding the food for her all she had to do was pull the hand toward her mouth. She cottoned on to this pretty quickly and within about a week we were able to put the food into her hand and she would manage to get it into her mouth.
So what if your child doesn’t get it? What if they have little to no interest in eating and are not motivated by food? At this point it is best to ask yourself if they really are ready. If your child does not require solids for a medical reason (such as impending heart surgery that requires weight gain), consider backing off on the weaning process. Give them time to progress developmentally and then start again in a few weeks. Even typical babies are not always reading for solids at 6 months, and that is fine. If your paediatrician is concerned about iron intake (which is the main reason that solids are considered necessary from 6 months of age) talk to them about testing your child’s iron levels in their next blood panel. Anaemia is a legitimate concern, but this can be allayed or confirmed with a simple addition to their blood work and then addressed if required.
Another concern I often hear is “but my baby doesn’t have any teeth”. Believe it or not – teeth are irrelevant. Babies instinctively chew, and gums do a mighty fine job. If your baby is having trouble with chewing motions, get your speech pathologist on board. They may be able to help you incorporate BLW into your little ones therapy program. If your baby doesn’t have the dexterity to pick up food and this is an ongoing issue for weeks and months – speak with your OT. If you have any issues with a therapist not understanding BLW the best thing to do is encourage them to read up on BLW (provide them with the links to the OT article and PT slideshow listed above) and ask that they find a way to incorporate it into therapy. For Elva BLW has been a fabulous speech and OT exercise, and we have been amazed at how well food has worked as motivation for her to work on her fine motor skills.
With our children the main thing to remember when commencing BLW is to watch your baby and follow their cues. Elva has very quickly progressed to wanting what we have and eating dinner with the family. She loves meat, but so far has been more than happy to eat just about anything I put on her plate. While she still has no pincer grasp, she has become so adept with her palmer grasp that she is capable of feeding herself individual blueberries and peas. Talk with your child’s OT and Speech Pathologist and get them onside. Once they understand what you are wanting to achieve they should be able to help.
It is important to keep in mind that BLW is primarily about learning to control food and the eating process. The ingesting food part is secondary. Expect that there will be mess, lovely tactile learning mess. If you have a dog your child will be their new best friend! Don’t worry if it appears that most of the food has been smeared rather than consumed – this is to be expected and will improve with time.
But won’t my child choke?!
An absolutely valid concern. Your child will most certainly gag on their food during the course of their weaning journey. This is developmentally normal, and is actually a necessary part of the weaning process. Babies have quite a far forward gag reflex. The act of eating pushes this reflex back further down the throat so that as adults we are capable of eating meals without gagging.
When we first started Elva on solids she had a gagging problem, we believe caused by 4 weeks of tubes down her throat in the NICU. She would at any time suddenly start gagging on nothing and just dry retch continuously. It was rather awful and would alarm strangers in public. When she was eating it would happen very frequently, and continued to do so for several months. Over the time it happened less and less, and now I cannot remember the last time it happened. Gagging is normal. But choking is not.
So what is the difference? Gagging is noisy and dramatic, but the individual can still breathe. They stay a decent colour and often physically retch from the force of the gag. Gagging is the bodies natural reflexive response to a foreign object too far back in the mouth, and is designed to propel the object forward and out of the mouth and airway. It’s essentially a defence mechanism against choking and should not be interrupted, as actions such as fingers in the mouth or a slap on the back can push the food further down and cause actual choking. Choking happens when the airway is partially or fully blocked. The individual is usually silent or very quiet. If the individual can breathe at all, it is strained and difficult. They go blue, and then may pass out. Choking is not common, but it does happen. For more information on choking and gagging this blog post is a great read. The main recommendation I can give you is to not feed your child hazardous foods (e.g. popcorn, whole grapes, raw apple slices, globs of nut butter) and take a first aid course. First Aid courses are great for peace of mind all round!
Baby Led Weaning has been great for Elva. She is now 11 months old and eats what we do. Her fine motor skills, whilst still delayed, are progressing well and she is adeptly making up for the gaps in her abilities with the skills that she does have. While BLW wont work for every child with Down syndrome, it will work for many and should be considered as a valid option by parents and health care professionals alike. Our kids are capable of so much, and should not be limited!
I hope that this has helped you. Have you used BLW, or are considering using BLW? Leave me a comment below detailing your own experiences when introducing solids to your child with Down syndrome!