Many of us have had the unfortunate and painful experience of facing lactation after stillbirth or neonatal death. Here we pull together what we know—what has worked for us, and what we learned later. If you need this information, we are deeply, deeply sorry. If you are looking this up for your friend, your sister, your daughter, your wife, or your patient, thank you. Make sure she knows that when her spilled milk was meant for a baby who is no longer in the world, she has every reason to cry over it.
Our experiences varied. Below, where applicable, we identify the person who shared her perspective.
after stillbirth or very early neonatal death
[Julia] Nobody can tell you how long it will take to stop lactation, and it's different for everyone. It took me three weeks. Constant binding pressure was essential. I used a very tight bra, cabbage leaves therein, with another binding mechanism over the bra to provide the ability to put cold compresses in (I recommend bendable ice packs they sell for sports injury or frozen vegetables). And yet, that was not enough until over two weeks later I added sage tea. Around a week later, it was finally over.
Sage tea can be found at stores such as Whole Foods, with the herbal teas in the natural remedies aisle. It's not as stinky as you would think. After the first couple of sips it's even sort of pleasant.
It will be very tempting to let the hot water in the shower get directly onto your breasts, but please don't—this will stimulate milk production.
While you will likely want lactation to stop, it is not uncommon to experience deep sadness as it is finishing. That milk was the last tangible proof that your baby was here, and it is hard to see your body let go of it. I had a nightmare the night before my milk stopped for good that was unambiguously connected to the stop of lactation. As with everything connected to this experience, let yourself feel what you feel. Nothing about this means you are doing it 'wrong'.
[Tash] You will likely leak when your milk comes in. It's ok to leak right into the cabbage in your bra, and change it frequently. You can also use pads. If you are not up to buying breast pads at the store, you might consider just putting some maxi pads in your bra (cut them in half to fit). Please make sure to change them out every few hours when they get damp or you may increase your risk of infection. It's fine to just leak, but again, keeping wet clothes —especially cotton—up against your nipples like this could lead to a yeast infection. If you end up needing to express a bit, It's good whenever you do that to let yourself air dry and take the opportunity to put on a dry bra or shirt.
A quick and cheap way to make hot/cold compresses: take two washcloths, dampen them, and put them in separate zip lock bags. Put one in freezer, and microwave the other as necessary.
Although you want to try and avoid warm water (hot showers), there are times when a little warmth can be a big relief. You may feel lumps forming in your breasts; these are clogged milk ducts and are incredibly uncomfortable and can become infected. Place a warm washcloth over the area for a couple minutes, and then massage the lump gently for another few. When finished, apply the cold compress.
[Janis] My midwife also said to add peppermint oil to the water, then make compresses and put on the breasts. That made me really cold and did not help. What worked for me- vitamin B6, 200mg for at least 5 days. it did not work immediately (and I don't think anything does)... took about 3-4 days to stop feeling like my breasts were going to explode, and after 5-6 days I was ok.
[A note from Julia: according to my search of the medical literature, you have to take high doses of B6, and if possible find the product that is mostly the pyridoxine form of this vitamin—it is this form that in high doses helps to suppress milk prouction. Normal amounts of B vitamins in your multi do not work because they represent the normal amount needed for healthy development and therefore, do not influence the volume of lactation.]
I have also had luck with homeopathic meds for many things and I found out that BYRONIA ALBA, 9C, three pellets three times a day helps with engorgement. And PULSATILLA 9C, three pellets three times a day for overabundant milk supply.
a note on the pharmaceutical solution
The drug Parlodel (bromocriptine) has in the past been widely used to stop lactation both by choice and following a stillbirth or neonatal death. Most doctors and hospitals have now stopped prescribing the drug for lactation suppression because of a number of studies showing high rate of side effects. In one study for example, adverse events related to bromocriptine given to inhibit postpartum lactation (in women who experienced stillbirth) were reported by 22% (60/314) of the subjects.
In addition, early return of ovulation has been reported with this drug. There are medical and emotional concerns relating to short interpregnancy intervals in general, and following stillbirth or neonatal death in particular. Thus, if you do use this drug to stop lactation, please discuss with your partner your intentions regarding subsequent pregnancy. If you would rather not become pregnant immediately, consider using one or more methods for preventing pregnancy.
when pumping or breastfeeding has commenced—after a later neonatal death
[Tash] Ending lactation after having pumped or even breast fed has its own set of issues. Your body is now programmed (even if you only did this briefly—in my case, six days) to produce milk to feed a child every 2-3 hours. You can go cold turkey, but it's painful. A more comfortable way is to wean your body off, let it know you need less, less often, and gradually it will reach that conclusion as well. Start immediately by reducing the time you pump (if you've been pumping 15 minutes per breast, go down to 10 for starts), and increasing the time in between pumps (if you've been going 2 hours, try stretching it to 3).
Depending how much you produce, you may need a day per change, or you may be able to stretch time in between from your morning sessions to your afternoons. Sometimes you may find if you simply let down (the ejection reflex that occurs after a minute or so of starting the pumping action) you'll feel some relief and can now go another few hours. Often when pumping consultants tell you to envision your baby or look at his/her picture to increase flow. Obviously it will be impossible at this point in time NOT to think of your child, but distracting yourself to the best of your ability will also signal to your body that you're not interested. I read a really graphic murder mystery during weaning myself off. A mindless tv program would probably work equally as well.
If you don't have a pump, you may want to occasionally bring the same relief by manual expression. There are some good graphics and instructions here (with no pictures of babies) if you are interested in this.
donating your milk
If you find yourself with milk that your baby didn't get a chance to eat, either stored in NICU or in your home freezer, you may be interested in donating it. Unfortunately, it is not always as easy or as straightforward as it should be. While some hospitals run their own donation and pasturization programs that use the milk exclusively for other NICU babies, others work with milk banks or do not offer this service at all. Here is a fairly comprehensive, if longish, summary of the different options available to you. While we present a mix of a short summary and our own commentary below, please read the full writeup linked above carefully if you decide that milk donation is something you want to pursue.
Three options are available for donating your milk: informal mother-to-mother, donation to an HMBANA milk bank, or donations to organizations that pose as something very much like a milk bank (and sometimes call themselves that as well), but in reality sell your donated milk to a company called Prolacta Bioscience, allowing the company to make considerable profit. While donating to an HMBANA milk bank comes with hoops to jump and certain restrictions apply (such that some women are excluded from donating—check their policies), you can be sure that once you donate your milk, it will go to benefit NICU babies. Mother-to-mother donations are much easier, and are greatly facilitated in the age of the internet—just go here to start. I (Julia), for example, was very touched when a close friend donated some of her milk in my son's name to a family in a nearby city.
Donating to milk depots (organizatons that sell all or part of the donated milk to Prolacta Bioscience) is something you should consider very carefully. Contracts signed with such organizations are often rather restrictive of your rights to your milk or the information learned from it. In addition, whether or not you are comfortable with someone making a profit on your donated milk is something you will have to decide for yourself. One prominent organization acting to a large degree as a milk depot is The International Milk Project. Their front page avertises the charity work of sending breast milk to Africa. However, if you dig around, you will find that 75% of the donated milk is sold to Prolacta Bioscience (although the chart does not disclose that the milk is sold to Prolacta, or that Prolacta makes a nice profit on it), and only 25% makes its way to Africa.
This is also the organization running the Madison Cassady program, a program that allows mothers who experienced neonatal death to donate their milk. Unfortunately, their web page is somewhat deceiving, stating "The gift of giving this donation of life through our Madison Cassady Program can be emotionally healing and fulfilling to both the grieving mother and life saving to the receiving baby." However, unless the mother goes through the entire qualification process and enters the regular pool of donors, no milk donated by her through this program actually reaches any babies. Instead, all milk donated through the relaxed qualification requirements ends up with Prolacta Bioscience and is used for research.
Only you can decide whether you are comfortable with milk depots in general and The International Milk Project in particular, but we urge caution. If you are not interested in undergoing extensive milk bank qualification procedures, we encourage you to consider the person-to-person donation.
Finally, everything works differently for everyone, and you may need to go through a few steps or suggestions before something works for you. If you find something that worked for you that's not included here, please let us know so we can add it to the list of suggestions.
With love —the editors