Today is Day 21 of the 31 for 21 blogging effort to increase awareness about Trisomy 21.
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(Edited to add: While the concept is great and it worked well, I can’t recommend it. The silicon nipple lasts for just a month before cracking; I bought several bottles and used a number of the nipples included and this was my experience with every single one of them. This is something that shouldn’t happen so fast and makes this bottle a frustrating and expensive option. With our second baby with T21, I used the MAM bottle, which also encouraged a strong suck, helped the baby keep his tongue in his mouth, just 40 shekels for the bottle (versus 160 shekels) and the nipple never cracked.)
Every time I go out with Yirmiyahu and pull out his bottle, I get curious looks and if the person is close enough to me, they ask me about it. Here’s why:
It looks a little bit different, doesn’t it?
After spending weeks working to get Yirmiyahu to be able to exclusively nurse, after a couple of weeks I saw that he didn’t seem to be getting enough. I still don’t know why this is – maybe I didn’t have enough milk, but I think it’s something else. Unfortunately I don’t have any professional feedback on this so I’m just guessing. Anyway, since my efforts to remedy this on my own weren’t working, I agreed to the suggestion that we give supplemental bottles.
The bottles were great – I was able to see how much he was getting and that was reassuring, as was seeing the return of wet and dirty diapers. But something more troubling also presented itself. When I had taken him to the doctor as well as the physical therapist just three weeks before, they had both commented on how good his mouth closure was. Since infants with Trisomy 21 have hypotonia, the lack of muscle tone can make it harder for them to keep their tongue in their mouth. I credited Yirmiyahu’s good mouth closure to nursing.
However, within two weeks of a regular bottle, his tongue began sticking out a lot more frequently. This isn’t a surprise, since sucking on a bottle requires a baby to thrust his tongue forward, and nursing requires him to pull his tongue inward. But surprise or not, it was disturbing to me – was this the price I had to pay to help him gain weight? I was feeling stuck between a rock and a hard place, when a friend suggested the Haberman feeder.
The Haberman feeder was created for babies with feeding difficulties, but I think it’s a good choice for all babies. It’s the only bottle that a baby has to use his mouth in a similar way to breastfeeding. There are a number of benefits to this, but the one that most interested me was that it would help Yirmiyahu build his oral motor strength, just like nursing.
Now, getting him to drink from this wasn’t so easy. While he could finish a five ounce bottle in twenty minutes or so, it took him four hours to drink the same amount the first time we tried this bottle. This was problematic because we needed to get his weight up, and for a few transitional days I gave him feedings from regular bottles as well as from the Haberman to be sure he was getting an adequate amount to eat, while giving him a chance to learn how to eat from this.
However, we got through that period and have been using just this bottle since then. Just as quickly as we saw his tongue begin to stick out more, we’ve seen it go back to how it was before. This would take a lot of speech therapy to overcome if we stuck to the regular bottle, so it’s a big savings in time and energy!
Another benefit is that excess air being gulped in along with the milk is eliminated due to the bottle design. Yesterday I happened to sit down at the park bench next to the school nurse and she asked me why we didn’t burp Yirmiyahu a few minutes after he started drinking his bottle. I hadn’t consciously thought not to burp him, it’s just that he didn’t need it.
Here’s a short clip of Mandy Haberman, the designer of this bottle, showing how it works:
The disadvantages to this bottle that I’ve experienced are:
– Cost – it’s not cheap! We spent 160 shekels on this, which at the current exchange rate is over $40. Contrast that with bottles that are considered upgrades/higher quality and priced at 40 – 60 shekels. (Updated to add: two nipples are included with the bottle. Since the nipple lasts only for a month before cracking and becoming unusable, this dramatically adds to the cost of using this bottle.)
– No lid – when you travel with this bottle, there’s no lid to prevent spilling. I haven’t found much leakage to be a problem as long as there’s no milk in the top part of the bottle, since it required suction to get it out. But when there is milk in the top reservoir, I just wrap a cloth around it in the diaper bag to prevent any leaking and that seems to work fine.
Avivah
Avivah, glad that this is working out so well for you! As for traveling with the bottle, I would suggest that you use the Medela caps for the bottle that come with the pump, and carry the nipple in a plastic zippy bag. Then, when you are ready to feed the baby, make the switch and store the cap in the zippy bag.
Great tip, Rena, thank you!
I don’t doubt your findings or your experience with your son, Avivah, but it simply isn’t true that nursing requires a baby’s tongue to be pulled inwards.
A breastfeeding baby’s tongue needs to be forward over his lower gums making the vacuum (closure) on the breast. The tongue is the muscle that the baby uses to “massage” the breast and get the milk. If a baby is latched on well, and someone pulls down gently on the baby’s lower lip, the tongue should be visible, right there, and if it’s not, then the mother is most likely in a lot of pain!!
Sorry, being a breastfeeding counsellor for nearly 15 years, I had to correct this misconception 🙂
I’m glad you found the Haberman feeder – it makes such a difference for so many babies.
My sister and brother-in-law, with their daughter with Trisomy 21, just kept (keeps) reminding her to keep her tongue inside. They’ve done this consistently, since the beginning, and my niece is pretty good at keeping her tongue inside, in general. At first they would put their finger over her mouth to help her tongue go back in and make it clear with their own faces what they were asking of her. Now a couple of words are all that is occasionally needed to remind her to keep her tongue inside her mouth. She’s 4yo already 🙂
I appreciate your clarification, Louise. This was really interesting; I haven’t been able to figure out where the problem in nursing is but I’m far from an expert so that’s no surprise. 🙂 I can see when he’s drinking from the bottle that something isn’t right and your comment about how a vacuum is formed is something to think about.
Happy to talk about it more any time you like. Homeschooling and breastfeeding are the two issues that I’m *always* happy to talk about and help people with 🙂
It certainly sounds (from what you’ve written) that it’s Yirmiyahu that has a problem latching and transferring milk, rather than a supply issue. Which is what I would expect, given that you have successfully nursed 9 babies and now have trouble with one. Especially when that one has trisomy 21.
Bli neder, I will see if I can find more info later today so that, if you do want to discuss it further, I will have more to share. I didn’t bring it up earlier, because you weren’t asking for help. I have a policy of only helping with breastfeeding issues only when the mother asks, and not butting in where my help might not be wanted.
I did look up a lot about trisomy 21 as it affects breastfeeding four years ago when I helped my sister. But I’m sure I don’t remember all of it now.
But still I would guess that this is the kind of thing that would have to be seen in person to figure out what’s ‘not right’ about the way Yirmiyahu suckles. Let me know if you want me to find you someone local (to you) who could help you (either a La Leche League Leader or a board-certified lactation consultant.
I’m glad you’re happy with it. I considered mentioning it to you, I don’t think I actually did, since I’m not an LC nor have I needed to use one, but the benefits are evident to me.
May Yirmiyahu continue to thrive 😀
The Haberman bottle is a wonderful invention! I used it successfully for one of my babies (due to cleft palate), and BH he is thriving. You may want to have an extra new nipple around or two, since they tend to wear out after a while. Out of curiosity, where did you buy it here in Israel?
Rachel, I bought it here in Karmiel at Shilav – this is where Medela said it could be purchased, and I was happy to be able to get the last one in stock. It came with an extra nipple, fortunately, so we’re set for at least a little while!
Louise, thank you so much for your offer! Tomorrow morning I’m meeting with someone locally and I’m hopeful that I’ll learn something that can get our nursing back on track. Too quickly the bottles have gone from being supplemental, to nursing being supplemental. 🙁 I’ll be in touch with you if I have more questions; I definitely could use the experience of someone with a lot more experience than myself in this area. The doctors are no help at all, all they say is that I obviously don’t have enough milk and the only solution is formula (and they want me to concentrate the formula, to boot!).