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Breast/chestfeeding with a disability: Amy's story

I got a chance to have a nice 1:1 Zoom chat with my pal Amy Lockwood recently. This local maker and super-mom let us in on what it was like for her to breastfeed with a disability

What's your diagnosis Amy?

My official diagnosis right now is Ehler Danlos Syndrome (EDS) - hyper-mobility type. However, recent genetic test results have indicated that my son and I both have genetic mutations that have never been seen before in another human. So, we don’t actually have a diagnosis. We are part of a global research study called Rare for Care Program through Sick Kids Hospital. They’re comparing our results to other people in the world and trying to find anyone else like us. However, EDS is the closest diagnosis and it’s how I access services. So, we do know that what we do have is a connective tissue disorder, we just don’t have a name yet.

What is a connective tissue disorder exactly?

Connective tissue is in all your joints, organs and skin. Collagen is one of the elements of the connective tissue matrix that supports our tissues. My son and I have collagen that is overly stretchy and similar to a hair elastic that’s been stretched too much, once it’s been stretched too much it doesn’t really bounce back to its original form. That’s what all of our joints are like. EDS is degenerative in the sense that if you use something too much the function can be essentially gone. We wear out our joints. That’s what has been happening with my hands, they’re quite affected by my condition. Another feature of EDS can be hyper-mobility. All of my joints bend forwards and backwards and I have super stretchy skin.

When were you diagnosed?

I was diagnosed at the same time that my son was. He 22 months and I was 32. We weren’t looking for a diagnosis for me at the time. As my son was born with some medical complications there was a lot of investigation into his health. When we were investigating his health a lot of questions were asked about his function and I would write symptoms or signs off and say, “well I have that too, so he just gets that from me,” but there were all of these seemingly insignificant things that ended up being very significant. Since I had my son my symptoms have progressed much more quickly. It seems as though childbirth triggered a lot and also just being a mother is very physical and puts a lot more demands on your body: lifting, carrying, picking up, even holding your kid. I started having a lot of trouble with my wrists breastfeeding. It hurt to hold him in the same position over and over. I’m seemingly able-bodied, or I pass as able-bodied so I have an invisible illness. With my son it's much more visible. He moves quite differently, he's quite unsteady on his feet and he wears leg braces.

How was pregnancy for you?

One of the main challenges was to go off of my ADHD medication, which is a very big deal and very difficult for me. My brain felt very different, like I took off glasses and wasn't allowed to put them back on for a very long time. I didn’t have the best time during pregnancy in that I didn't enjoy being pregnant physically. I felt really crummy and early on in my pregnancy I had a tear in my uterus which we now know was because of my connective tissue disorder.

Did you have any particular challenges with feeding your son?

It was it was really difficult. I still think that quitting smoking and breastfeeding are the hardest things that I've ever done. I believe two things delayed my milk coming in. First, I had a really traumatic birth and second, my son had to be in another hospital away from me after his birth. My milk didn't come in until day six postpartum. I was pumping and trying to breastfeed and by the time my milk came in my nips were just ragged. When my son was in the hospital, every time they'd have to take blood or give him a needle, they would put sugar on his soother and put it in his mouth. I think all of the sugar given to him gave us both a symbiotic infection of thrush. We actually had thrush for FOUR months before it was identified. I just kind of thought like, oh breastfeeding feels like you're stabbing yourself in the nipple all the way back to your spine every single time. With regards to latch, you were the first person that got my son to latch.

You latched him; I was just there in the background as a coach

You helped, a lot.

Ongoing, my arms would hurt a lottt. I would not leave the house a lot because I required a Boppy pillow or nursing pillow to breastfeed. It was difficult going anywhere with my son because I would need to feed him, but it was so uncomfortable for my body to do in any other way than the way that I’d discovered.

I'm also very small, I'm 4 foot 10 inches and I'm not very strong. Even just holding him with one hand and trying to get my boob squished into a sandwich and into his mouth with the other hand was really physically difficult on my arms, my back and on everything.

In terms of an accommodating position for feeding—I would kind of pretzel my body, crossing my legs and putting one of my feet on a knee. That foot resting on my knee would actually cradle his head so that I would have both hands free.

Sometimes I would put an additional pillow under the foot that I was using to hold him for additional support. I am quite dextrous with my feet, thankfully. I wasn’t extremely comfortable feeding that way in public. I eventually learned to feed him lying down, but my son didn’t like that. I never produced a lot, so I did formula top-ups. My partner and I had a joke—when the baby had to feed it was “boob-boob-bottle time”

You did breastfeed for quite a while though, correct?* I this it’s great to approach feeding as not so white and black, like you did. Some folks can’t produce a full supply but continue to enjoy feeding their baby at the breast/chest for both nutritive and non-nutritive reasons while using formula as a tool to ensure that their kid meets their caloric needs.

Totally. Once my thrush cleared up, I did really end up enjoying it. I think because of my health issues and having had such a traumatic birth, I was constantly thinking I am not doing this again (not giving birth again) so I’d better get a lifetime’s worth of this feeling, connection and this experience because I don’t think I will be doing it again. It wasn't just about giving the breast milk to my son, it was also me enjoying my experience breastfeeding. So I dug into the experience and enjoyed it. I breastfed for 14 months. I started going back to work and was struggling with it and really needed to go back onto my ADHD medication, that was the reason that I stopped.

How much support do you have raising your son?

We have a really good support system. When we had this son who had medical issue after medical issue (his first year of life he was collecting diagnoses like baseball cards), I made the decision to get out and go to all the moms groups and everything to build a community around him that can support him in and by-proxy support us as a family. I've found it so beneficial to have this community that was built around our growing our family. I have friends in the area and I am getting better at asking for help when I need it (doesn’t come naturally to me). Our parents don’t live close by, which is why I need to get better at asking for help.

*I know Amy, so I knew she fed for a while. I would never assume that someone would breast/chestfeed for any length of time.

This is one of Amy's handmade (she makes them!!!!) toys from her company Lockwood. in her words, "representation is important for ALL children, not just children with disabilities" and starts in the toy box. Amy is powerful advocate and fierce mom AND maker. Coolest. Mom. Ever.

Check out Amy's line of inclusive toys they're not only groundbreaking but incredibly beautiful.

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