We're lucky today, because there are quite a few different options available for feeding a cleft-affected child. Traditionally they would need a nasal-gastric tube until they could feed by themselves. Now we have access to bottles with specially designed teats to Make sucking easier, and bottles that can be squeezed to help with the over-exertion.
These don't come cheep though. The bottles range from $30 to $60 each, and there is no financial aid to buy them. Also, there's no way of knowing which bottle will work best until you try them. With Ellie we knew that her cleft was going to be severe, so rather than wasting time and money trying the different bottles available, we simply bought the most advanced, the Madela Special Needs Feeder, also called a Haberman.
The Haberman has a specially designed teat, it's longer than a normal teat, and you can squeeze it to help with feeding. It was a good choice: Ellie was able too feed with it easily from the start, and hasn't had any feeding issues at all. But it's also the most expensive in the range.
Like with any bottle, the teats wear out after a few months use. The Haberman also has a small valve to regulate milk flow, and that had also started to warp on ours. To replace the parts in both of our bottles was going to cost over $60, which is a lot of money when you have limited income.
Before I ordered the replacements though, I decided to do some investigating. Her mouth and tongue are a lot stronger at almost 5 months old, and I was interested to see what else might work. I asked around and found some other teats, Chu Chu teats, were highly recommended, so I ordered these instead.
While I was waiting for them to arrive I tried something. I got a normal skinny-neck teat, and cut the hole a little bit bigger, so that the flow would be faster. I didn't expect Ellie to be too impressed with it, but I was interested to see what she thought of a different type of bottle. The result was unbelievable. Not only was she happy to suck on the different teat, but she managed to drink the whole bottle by herself, without any help!
I was blown away. One thing I never expected was for Ellie to drink from a normal bottle. The whole time I was feeding her I had a huge grin on my face. It doesn't seem like such a huge achievement, but for a cleft-affected child like Ellie it has incredible implications. Obviously it's a lot cheaper to by a standard bottle rather than a specialised one, but there's more to it than that.
A lot of people wouldn't be aware that a baby depends on the action of sucking and swallowing to strengthen their tongue and jaw for speech. By feeding with specialised bottles and teats, they don't get the opportunity to strengthen these muscles, and that leads to speech delays and impairments. That's why we see a speech pathologist for feeding problems.
Ellie still isn't strong enough to take every feed from a standard bottle, but hopefully the chu chu teats will help with that. I've also ordered a few squeezable bottles, just in case she needs that extra bit of help. And with a bit of perseverance, hopefully she won't find her speech too badly affected from feeding.
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