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Disclaimer: The following is a comment we received in January 2020 from a visitor to www.007b.com website. We're posting the comment since it may be helpful to those who suffer from this rare condition. Please note that while we don't know of any of this information being wrong (we wouldn't post it if that was so), www.007b.com is not responsible for the accuracy of it.

A link between ectodermal dysplasia and insufficient glandular tissue / low milk supply

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Thank you for this wonderful and informative website. I wanted to make a content suggestion that I was hoping you might consider adding. I was hoping you could add a section on your website about a genetic condition called "Ectodermal Dysplasia" and its effects on breasts and breastfeeding.

I have insufficient glandular tissue and faced many challenges breastfeeding my three children. I never had anyone tell me my breasts were abnormal looking other than one female gynocologist who pointed out that I had one breast slightly larger than the other. My breasts have always been on the small side but not tiny. I don't have tubular shaped breasts nor do I have a large space in between them, but there is about a half inch to three quarter inch gap between them. I noticed in each of my three pregnancies that my breasts did not increase much at all in size.

I'm happy to report that despite my very, very low milk supply, I was able to nurse all three of my children at the breast for 3-5 years each (via a combination of regular breastfeeding, breastfeeding with the Medela Supplemental Nursing System, and pumping every few hours for 3+ years for each child). I did also have to supplement with formula and a bottle, but nursed the majority of the time with as much breastmilk as I could make/pump. I was lucky to have an extremely supportive husband and financially was able to be a stay-at-home mom, otherwise I don't know if I would have been able to do all of that, especially for that long.

Despite managing to have a breastfeeding relationship with my children, it has always bothered me that I wasn't able to breastfeed like a "normal" woman. After I found out I had insufficient glandular tissue following the birth of my first child, I was absolutely devastated. I cried a lot that first year. I simply couldn't understand why this had to happen to me and my baby. Nursing with an SNS was very challenging and a hassle; it was hard not only on me but my babies and our whole family. Nursing with a tube taped to the breast and a plastic container hanging around the neck, having to pump all the time, carting milk, pump parts, the pump, bottles, the SNS, ice, and tape around everywhere we went radically altered how we spent our time as a family for years. Needless to say, the situation was not ideal and it created in me a strong desire to find out why my boobs just weren't making enough milk.

I have done extensive reading online as to potential causes of breast hypoplasia and glandular insufficiency. And I came across a cause that is not well known (but scientifically established) which I came to find out is the cause of my breastfeeding/mammary issues. It is a genetic condition called, "Ectodermal Dysplasia". ED affects the development and function of many parts of the body including teeth, fingernails, hair, skin, sweat glands, salivary glands and mammary glands. There are many forms and sub-types of ED and those who have it may have some but not all of the same symptoms.

Males with Edctodermal Dysplasia tend to have more noticeable and readily diagnosed symptoms (like missing teeth, baldness, inability to sweat, malformed fingernails, etc). If one googles ED, there are some patients with some pretty dramatic looking physical presentations of ED. It is important to know that many people with ED do not all have such a striking physical presentation.

Though there are some women who have very stereotypic ED physical phenotypes, many females with ED have more "mild" symptoms and scientists/doctors often refer to them as "carriers" even though they still have ED and even when their "mild" ED symptoms can radically affect their lives. In my research, I noticed anecdotally that many women who are considered ED carriers often have thin/fine hair.

There are research studies that have documented women with ED who are completely missing breasts, have only one breast, have underdeveloped breasts, one breast bigger than the other, malformed breasts, and/or the inability to lactate, and/or low milk supply. Since a woman can have ED yet "only" have "mild" symptoms like for example thin/fine hair and breast/mammary issues, it is quite likely that a vast number of female ED patients go undiagnosed. Often female "carriers" are only diagnosed after they have a child with more pronounced symptoms or a relative is diagnosed.

Because there are likely so many women/girls out there with undiagnosed ED, I suspect that it is entirely possible that a vast majority of women with low milk supply or related breastfeeding issues could have undiagnosed ED.

I am hoping that you consider a section with info about ED symptoms, how female ED "carriers" are not just "carriers" and that many in the medical and general community are not aware of how significantly ED can affect breast development, mammary glands and the ability to lactate.

I wish I had known sooner as it would have saved me from a lot of guilt and self-blame. I wasted a lot of time feeling like I had failed my children and feeling inadequate as a woman. I remember spending a lot of time thinking about how I must have done something to cause my insufficient glandular tissue (like exercise too much, spent too much time around chemicals, etc.) I also would have not wasted so much time during the first four months of my first child's life trying to figure out why our breastfeeding relationship wasn't working. I spent an inordinate amount of time meeting with several lactation consultants, three breastfeeding doctors, drove up to Canada for one of them, took breastfeeding drugs (which didn't work), tons of supplements, repeated hormone tests, subjected my baby to three tongue tie treatments.. . only to finally find out that it was just my inadequate boobs and there was nothing that could be done. I wish that I could have saved the money and time I spent and instead had more quality time with my baby. Had I known earlier that I had ED or that ED could be a likely cause, I might have started pumping earlier, might have supplemented with formula earlier (my baby was so skinny those first few months), etc.

So if info about ED can help even just one woman out there like me, I think it would be worth it.

I want to also put it out there to all new moms with low milk supply that I really encourage them to keep trying to maintain whatever breastfeeding relationship they can. Despite what a pain pumping and the SNS was, I would do it all over again.

In my experience I found that there was nothing like the breast that worked to soothe my babies when they were tired, emotionally upset, ill, or physically hurt. Being able to comfort them with the breast (with or without milk coming out) was extraordinarily helpful and also made it so I/they could get more sleep at night. I can't tell you how many times I or my husband would try to put my babies to sleep using a bottle only to have them reach/turn for the boob and after what seemed like forever with the bottle, it took only a minute or two (or less) on the boob for them to fall asleep.

Besides all the well known benefits of breastfeeding and breastmilk (nutrition, increased immunity from diseases, bonding, saving money, etc.) many new moms might be interested to know that breastfeeding helps tooth/jaw development in babies and children. Breastfeeding helps to expand the palate (so teeth don't come in crowded). So even if you can produce no milk at all, nursing with formula via a supplemental nursing system might be beneficial for that reason alone.

It has also been reported that breastmilk can help reduce constipation and I found this to be the case in my babies. Even just 4oz of breastmilk per day helped my babies poop better than when they had no breastmilk. They were always constipated with straight formula. And it is so sad to watch a constipated baby trying to poop (bright red face, grimacing, grunting, crying, screaming some times and only getting out hard pellets of poop). . . poor things! So even if you can only produce a small amount of breastmilk, it can still be worth the effort.

I also want to encourage all new moms to invest in a pump before giving birth just so they can be prepared to pump should they need to boost or maintain their milk supply at some point during their breastfeeding relationship. Many new moms don't realize how dramatically milk supply can be affected by lack of stimulation at the breast or inconsistent stimulation. Having the pump at the ready can literally save the breastfeeding relationship. In my experience, if I wasn't nursing or pumping every 2-3 hours, I noticed a drop in my supply.

I also want to encourage all expectant parents to consider watching videos that show babies' rooting reflexes. When I was pregnant, I was pretty sure I wanted to breastfeed but was ambivalent about how long I would breastfeed. My husband and I attended a breastfeeding class where they showed a video (probably made back in the 1970's or 1980's) of moms with their newborns. The video showed how the babies instinctively would root or search for the breast by sniffing for the boob, bobbing their head up and down until they would bonk into the boob, would roll their head around the mom's chest searching for the nipple, etc. It was comical but also really poignant. It really helped educate me as to how hardwired and important breastfeeding is to babies; how much they crave that contact. It is one thing to know intellectually that breastfeeding is beneficial, it is another thing to watch tiny newborns relentlessly searching for the nipple, banging their heads on their mothers' chests to the point of exhaustion. Viewing that video left no doubt in my mind that I did not want my baby to root in vain. I was no longer ambivalent about whether I would breastfeed or for how long I would breastfeed. It helped me realize that I wanted to breastfeed until my baby no longer wanted to breastfeed. And it created a tenacity in me about breastfeeding that I never would have predicted prior to watching that video. It was really profound. I don't know if it would affect other parents in a similar fashion, but I still think people ought to watch rooting videos merely so they can see for themselves what the rooting reflex is and how to recognize it in their newborn. And if parents find it helps to bolster their resolve to continue to breastfeed during challenging times while breastfeeding their baby, all the better.

Andrea
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