One of my former students is in grad school at an impressive school in another state, not to be named. She's currently shadowing a lactation consultant, which I think is super-cool. Today I got a call and email from her: she and the lactation consultant she's shadowing were meeting with the mother of a two-and-a-half month old baby who has Down syndrome. The mom was concerned because the baby's not breastfeeding very well, and she was afraid that the low muscle tone in the baby's mouth was going to make it impossible for them to continue.
Here's the deal: my student is shadowing a person at an impressive hospital, and in that hospital, none of the lactation consultants have any experience with babies with Down syndrome. So the consultant asked Taylor to look in her textbook (a breastfeeding textbook, I guess?) which had one paragraph on breastfeeding and Down syndrome.
Which means that I became the expert! The lactation consultant actually asked Taylor to call me! These are exclamation points of exasperation!
I'm perfectly happy to be in touch with the mom, and I fortunately have a community of other moms here who may well have good information to share, but I am by no means an expert on lactation. I hope that the professionals at this hospital will take this as an opportunity to become a stronger unit and do some research on breastfeeding for kids with all kinds of disabilities. Taylor, some dissertation opportunities for you, perhaps?
10 years ago
5 comments:
I gave birth at an "impressive" hospital, and after not magically figuring out how to nurse perfectly from two visits, a lactation consultant basically threw up her hands and said, "Well, it's going to be hard for you." Still pretty amazed, as I thought these were the folks above all others who were there to stick with you through the difficult work of figuring out nursing, which is far harder than anyone seems to let on.
Also -- a related very thoughtful post I thought you guys might comment on about perceptions of disability: http://parenting.blogs.nytimes.com/2010/09/21/is-it-harder-to-have-a-child-with-down-syndrome/
Good grief, Tracy--I realize that I'm generally out of touch with the world around me, but I can't believe no one had alerted me to this series of articles until now! This is JUST what I'm beginning to research! Thank you!
I haven't read the comments thoroughly, but just skimming through them I'm beginning to feel sick to my stomach and/or the beginning simmering of rage. I suspect I'll have some things to say.
There is definitely something to be said for "ignorant bliss", and tuning out the consensus of opinion about what "they" think a particular group of people can or cannot do, "their" ideas of what is "normal", and approaching one's own situation without the added bias, and achieving what others would say isn't possible. Imagine, Alison and Tracy, where we would be as women if we bought into the consensus of opinion on what "they" think we as women can and cannot do and what we are capable or not capable of- laughable, when you think about how they have been proven wrong. Not wishing to call attention to myself in any way, but your posts as well as the one Tracy shared I cannot help but identify with and relate to...being the oddball in so many ways my entire life as a "marginalised" person in more than one way. It's those exceptions, different and unique folk that have made and make all the difference in the world and affect the most profound change in the world. Vive la différence! Prove 'em wrong (: BTW, SOULS are infinite!
Thank you Tracy for sharing the excellent article. Had I commented, I would have said something similar to #45 Anne's comment.
Muscle tone, potty training and Down Syndrome- there are some children, Down Syndrome or not who develop the muscle control, especially bladder control later than others. I didn't up until I was eight or nine. I was also born badly pigeon toed ("in-toeing", which can cause hip/back problems) and required the corrective shoes with the awful bar and braces up until I started school- I now walk probably better than most, since my focus has always been deliberate, heel/toe correct walking, and correct posture. I'm a walking anomaly in so may ways (: Again, Vive la différence!
Thank you for BEING the difference.
So, I have a follow-up. It turns out, one lactation consultant in the hospital has experience with babies with DS, but only because she was a NICU nurse, and worked with babies with low muscle tone. While working with this LC, she was able to get a little more milk, but not a substantial amount. It was kind of like, "Oh, well, did all we could. Nothing more to do." I was appalled. It's so pathetic! I wish I could say Tracy's comments are outliers, but I'm finding more and more her experience is more the norm. This is definitely something I am interested in and researching for the dissertation (I got the idea before this particular case) about how some moms are encouraged to breastfeed and given more support while others, who may have difficult situations or need more help are not. I'm glad the sarcasm and my disgust about the lack of knowledge and care came through in the email. I actually took the initiative to look up the information in my lactation textbook. The LC didn't seem to care. I also went over the information with the mom, something as a student I am not supposed to do, but the LC wasn't going to do it. I don't know if it's personal apathy and/or burnout or if the culture of biomedicine is to blame.
Well, I lucked out in our little local hospital. Despite my homebirth they let me use the services of their lactation specialist (just kidding on the let me part) and she was very wise. We used what is called a "finger feeder", a teeny latex tube attached to a small baglike thingie filled with pumped milk(techno talk) that you taped to your finger, hold the baby against your breast and they can suck more easily on that, developing their suck until transferring over to the breast. I loved it, we were successful over a month or so and then transferred to bf'ing for another couple of months. We did not breast feed as long as some but enough for the health benefits. I kind of liked the opportunity for my husband to feed her in such an intimate fashion!
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