Two months ago I read a poignant account of a pediatrician who wanted desperately to breastfeed and found out after much heartache that she suffered from Insufficient Glandular Tissue. She tried everything under the sun only to feel judged by breastfeeding advocates: “Please don’t stare at me as I reach for that bottle and feed my baby and think…I can’t believe she doesn’t breastfeed her baby. Please don’t go all Gisele on me. You don’t know.” She’s right.
Sometimes when we, as breastfeeding advocates, try to allay the very common fears that moms have that they won’t be able to breastfeed, we can end up invalidating those moms who truly can not breastfeed. Even if the percentage of mothers who are physically not capable of producing milk is quite small—apparently about 1 in 1000 or much less than one percent—it is important to acknowledge and support women who suffer from insufficient glandular tissue (IGT), the hardware needed to make milk. And while 1 in 1000 may seem like a small percentage, that translates into 4,000 mothers with IGT giving birth every year, often undiagnosed, and a little more than 4,000 babies, due to multiples. That’s a lot of suffering and anguish.
Out of curiosity, I googled around to find other conditions with that risk ratio and found that 4,000 infants are affected with Rh disease every year, 5,000 infants are diagnosed with congenital disorders, and 4,000 live births per year dianosed with Down’s Syndrome. Those may be lousy comparisons, but I can’t help wonder how many conditions are much better known, diagnosed and treated than IGT with the same risk ratio? I suspect there are a lot. How can it be that this particular pediatrician, and all pediatricians and ob/gyns, who are routinely trained to spot conditions far rarer than IGT, are not being educated on the tell-tale warning signs of insufficient glandular tissue? Why are ob/gyns not taught to examine every pregnant woman’s breasts for signs of IGT, and if there is a likelihood, why are they not coaching women on managing their expectations, letting them know that many women with IGT can go on to breastfeed, or can supplement at the breast, giving the baby and mother the benefits of skin-to-skin, oxytocin (the love hormone) release, bonding, and jaw development that comes with suckling? Why are hospitals and medical professionals not setting up a routine protocol, like the American Academy of Pediatrics urged for newborn screening, so that those women are monitored in the critical early postpartum phase and are supported to maximize their breastfeeding potential? Are enough health care providers reading “Making More Milk“? (Our doctor and ob/gyn friends out there, correct me if I’m wrong!) Some women who have IGT can go on to breastfeed, and knowing how breastfeeding reduces the risk of so many infections, illnesses and diseases, it would seem that our healthcare system would want to train future physicians to optimize breastfeeding success. Therefore, one of the most powerful things we can do as breastfeeding advocates is to educate moms, the media, and healthcare professionals about IGT, even if it is relatively rare, and validate and provide resources for those moms who suffer from it.
And the urgency grows every greater. There are some who think that environmental toxins and endocrine disruptors such as BPA are playing a role in increased cases of IGT. Women who need added hormones to sustain a pregnancy are also likelier to have the underlying conditions that result in IGT. We need the environmental movement and fertility treatment organizations to rally behind this issue, and fight for the rights of moms to get the help they deserve. We need insurance companies to cover the cost of lactation counseling, breastpumps, supplemental nursing systems and very importantly, donor milk for mothers with IGT. We need counseling and resources for mothers who grieve the loss of the breastfeeding relationship.
We also need to educate our fellow breastfeeding advocates. The longer breastfeeding enthusiasts are allowed to judge other mothers, the longer it will take to shift the focus off “the mommy wars” and on to the true barriers to informed infant feeding decisions and the booby traps that keep moms from achieving their breastfeeding goals. That is one of the many costs of invalidating moms that we can not afford to pay. If you catch another mom judging someone who bottle-feeds (or actually, judging another mom at all), we hope you will gently but firmly stop her in her tracks (without judging her, LOL)!
I asked Diana Cassar-Uhl, IBCLC and La Leche League Leader, an expert in this field, to weigh in on this topic and provide a resource list for mothers with IGT or other low milk suply issues. The resources are below. Tomorrow I will post a moving and personal story from Diana that makes all of these points hit home.
Resources for Breastfeeding with Insufficient Glandular Tissue/Mammary Hypoplasia
Making More Milk, by Diana West, IBCLC and Lisa Marasco, IBCLC (can be ordered on Amazon.com)
Excellent Overview article, suitable for healthcare providers, about support of breastfeeding with IGT/hypoplasia: http://www.llli.org/llleaderweb/LV/LVIss2-3-2009p4.html
For information about herbal and pharmacological galactagogues: http://www.lowmilksupply.org/increasingmilk-galactagogues.shtml
Do you need to supplement? http://www.lowmilksupply.org/supplementing.shtml
Do you have to supplement with artificial baby milk/formula? http://www.llli.org/Release/milksharing.html
Mothers Overcoming Breastfeeding Issues – outstanding resource for mothers who are grieving breastfeeding experiences that didn’t go as expected or planned http://www.mobimotherhood.org
Pictures of hypoplastic breasts: http://www.007b.com/breast_size_breastfeeding.php
Why feed at the breast at all? http://www.normalfed.com/Why/staytouch.html