As a fellow double-mastectomy survivor and mom, who lost my breasts at 37, I read with tremendous sorrow Emily Wax-Thibodeaux’ story of being harassed and bullied for formula-feeding her son. Having cancer at a young age is a traumatic experience. The last thing Ms. Wax-Thibodeaux deserved was to be treated with a lack of respect or compassion.
I don’t know the specifics of where Ms. Thibodeaux delivered, or what the credentials and training of the health care professionals who tended to her were, and we have called for an investigation. But what I do know is the hurt and the grief that comes with losing your breasts during your childbearing years. I know what it feels like to be ambushed by diagnosis during the most hopeful epoch of your life and to have no choice but to sacrifice your reproductive parts to spare your whole. I know what it feels like to be betrayed by your body.
I know that the chokehold of cancer subsides as you move through surgery and treatment to recovering, but that no matter how healed you are, the pain and the fear of recurrence are ever-present. Every illness, every doctor’s visit, every peculiar lump under the skin, threatens to re-shatter your world. I know what it feels like to have your trust in statistics and your youth blown to smithereens.
I know that being pregnant and giving birth put you on a collision course with that grief all over again and that the vast majority of expecting and new mastectomies moms do not get the compassionate and evidence-based care they deserve to help them deal with the reawakening of that grief. I know that the increasing epidemic numbers of breastless young women in this country do not walk through the door of motherhood with grace, information and a full set of options.
I know that our disease-based health care system still does not properly train and educate its professionals about breastfeeding in healthy mothers — with or without breasts — because at the highest levels of policy-making we don’t value the contribution that breast milk makes to the PREVENTION of illness and to the PROTECTION of our collective health.
And I know that if I had gone on to have a third baby – mine were 2 and 5 at the time of my bilateral diagnosis – I would have wanted the journey to motherhood without breasts to have followed a very different storyline than the one presented by Ms. Thibodeaux.
I would have wanted my prenatal care provider to talk to me as both an expecting mom and a breast cancer survivor about how the birth process impacts a woman with double mastectomies; to have heard about how the delivery of the placenta triggers milk production in most mothers, so that in a very small minority of mastectomies patients, if there was any remaining mammary or nipple tissue in the armpit area, I might experience swelling in my armpits. If this was in the realm of possible for me, I would have wanted to know.
I would have wanted to hear about my options. Not just formula, but human milk–the next best substitute to milk from my own body. I would have wanted to be fully informed about the unique properties of human milk, and of the benefits and risk of milk sharing, and of the assured safety of donor milk from a HMBANA milk bank. I would have wanted to know.
I would have wanted my prenatal care provider to create a safe place for me to mourn anew the loss of a very important biological function, not just a pair of ta-tas.
I would have wanted to learn about my baby’s biological imperative to crawl from womb to breast during the magical hour after delivery, in search of comfort and food, and about how despite my new anatomy, I could still feed my child at the breast, using a supplemental nursing system (SNS) containing either donor milk or formula, and a plastic teat (nipple shield). . . I have no nipples so that would be a must. I would have wanted to know.
I would have wanted to be informed about how nuzzling and suckling skin-to-skin after birth lowers stress levels and promotes growth and enhanced food absorption in babies, and that mothers report feeling more attentive and confident one year later whether they continue breastfeeding or not.
After experiencing such catastrophic loss, every fiber of my being would have wanted to hear more about how I could still participate in this mutually beneficial and beautiful experience, and about how it might help me to heal.
I would have wanted to make an informed feeding decision and plan based on what I learned.
And when I delivered, I would have wanted my past history and my feeding plan to be well-documented in my chart, so that all hospital staff — from nurses, to feeding specialists (International Board Certified Lactation Consultants (IBCLCs)), to the pediatricians and OBs – would have been on the same page with my intention to feed this baby either donor milk or formula on my bare chest with the help of an SNS and a nipple shield. No one would have had to dig for information; I wouldn’t have had to explain. A care plan would be underway and with it, a great deal of compassionate assistance.
I would have wanted to watch my new baby crawl to my chest and be mesmerized by his motions. I would have wanted to feel him melt into me and to meet his desire for a first feed with the assistance of the professionals in the room. I would have wanted the chance for my body to nourish his, and it wouldn’t have mattered that the milk didn’t come from me. Ms. Thibodeaux was right when she took the words out of my mouth. It’s Not Just About Breastfeeding.
I never got the chance to do any of this, except in my dreams. In the 9 years since I lost my breasts, I have had a recurrent dream of birthing and nursing a new baby just this way.
If we continue the way we are going, most mastectomies moms will never get to make an informed decision or have this kind of experience, though there are a lucky few who have. Read this incredible story of a reconstructed mom who, with the help of an extraordinary IBCLC, was expertly guided from grief to alternative feeding method to profound healing and relief.
Ms. Thibodeaux didn’t get what she deserved — on many levels– and for that she has every right to be angry. But the solution is not to throw human milk and breastfeeding under the bus and with it, millions of moms and babies each year.
The fact is that we need MORE not LESS systemic support for breastfeeding. Human milk does make a difference. It’s the undisputed foundation of human health and every mother’s and baby’s birthright. When you delete it from the equation of ‘how to grow a healthy human being’, there are clear population-wide negative results — including higher rates of breast cancer. It is especially a lifesaver for babies who are born early, compromised, or otherwise fragile. Read about our annual spring Miracle Milk™ Stroll and the Miracle Milk™ Fund, and take a few minutes to appreciate the staggering difference donor milk in the NICU makes in both mortality rates and suffering.
Moreover, of the 79% of new moms in this country every year who WANT to breastfeed, 60% say that they don’t make it to their personal goals of even a few days or weeks. That’s 2 million moms a year and their babies who are sabotaged by a system and a culture that do not yet get the huge emotional and physical price we all pay when women are cut off from breastfeeding.
The real bullies are everyone who tears down breastfeeding or stands in the way of helping the vast majority of moms get the information and empathetic support they need so that they and their babies can thrive, not just survive.
Fueling the argument against breastfeeding threatens to erode the impetus for that support. It throws the baby out with the bathwater. That’s the last thing all of us need.