Milk for Lucia

Heather and Dan wanted lots of kids. Enough kids to have their own soccer team at least, or maybe to start a band. They were so excited to welcome a second child into their family. Their son, Dylan, was two years old, and it felt like the perfect time. Being pregnant, birthing, breastfeeding, caring for a baby, parenting a toddler, Heather loved it. She was good at it. She and Dan were good at it together.

I met Heather and her baby girl, Lucia, on a spring-like August afternoon in the park. It was at the annual “Boobaversary” picnic – a celebration of the birth of a community breastfeeding and parenting support group founded by Mary, a breastfeeding advocate and educator. Mary organizes this active online and on-the-ground community of over 800 members.

Heather did not look like a woman who had just endured her 17th week of chemotherapy. She was beautiful. Radiant. Her eyes were full of hope, her body full of strength. She was thin, but not frail. The only clue that she had cancer was that there was no hair beneath the black ball cap she wore.

Her daughter, Lucia, was chubby and happy.  Adorable to the max. Dressed in an aqua-blue polka dot dress and a bib that said “Daddy’s girl,” at 4 months old she weighed a whopping 16 lbs, the same as my 7-month-old son.

Heather and I sat together on a picnic blanket with our babies and a circle of other breastfeeding mothers. “So, I guess my story is probably the most interesting here,” she said gently. I smiled back, leaving an awkward silence. Heather was used to talking with people like me, who didn’t know quite what to say. She continued effortlessly, “Lucia has had only breast milk. Most of these moms here either gave us milk or breastfed her during my treatments.”

For most of her pregnancy with Lucia, Heather felt great. She still managed to continue running into her 8^th month. But then something didn’t feel right. She couldn’t put her finger on it.

Neither could the doctors at first. Fluid was accumulating in her abdomen, but outside of her uterus. There were exams and tests, followed by more tests. And, then they saw them, the tumors. Heather was diagnosed with stage IIIc cancer of the fallopian tubes at 34 weeks.

This type of cancer is extremely rare, comprising roughly 1 to 2 percent of all gynecological cancers. It’s even more unusual to see this type of cancer in a 28-year old pregnant woman. Sometimes a strong family history of breast and ovarian cancer can be risk factors, but Heather’s BRCA tests and family history did not indicate a strong genetic predisposition.

Heather had spent most of her pregnancy with Lucia planning another midwife attended home birth. A home birth would have given her the freedom to do things that were so important to her – delayed cord clamping, skin-to-skin immediately after birth to encourage breastfeeding, encapsulating her placenta.

Her birth plan never included cancer.

Photo: H. Wascak

The doctors were willing to wait as long as possible to deliver her baby. But at 35 weeks and 6 days, Heather’s condition quickly worsened. Lucia was born via emergency C-section under general anesthesia. Immediately after her baby was delivered, a total hysterectomy was performed and the tumors were removed. Heather was taken to the ICU. Lucia was taken to the special care nursery. It felt like an eternity before Heather was able to meet her baby.

Nothing could have prepared Heather for the weeks that would follow. Lucia was having difficulty breathing on her own and so was transfered to the neonatal intensive care unit (NICU) at a nearby children’s hospital – mother and baby were separated further. For that first week there would be no skin-to-skin or breastfeeding. Baby Lucia was simply too frail.

Heather spent that first week attached to a breast pump while Lucia was in the NICU. “With Dylan, I had so much milk it was crazy. When I started breastfeeding him, he used to choke because there was so much, so fast. He would spit up all the time because his belly would get so full.” For a little while at least, she also had milk for Lucia.

She went to the hospital practically every day. Sometimes for her own medical care. More often to  bring her breast milk to the NICU for Lucia, who at that time was being fed through a g-tube. Eventually Lucia was strong enough to feed at her mother’s breast.

Photo: H. Wascak

Doctors told Heather she wouldn’t be able to breastfeed once she started chemotherapy. It was devastating news. “I was broken hearted. For 10 days before starting chemo I nursed her, and often. I nursed her on demand through the day and night while co-sleeping. I brought her to all of my pre-chemo procedures at Roswell so I could nurse and be with her. I pumped as much as I could. I wanted her to have my milk. Once I started chemo, I wanted her to have only breast milk. That was really important to me.”

 Photo: H. Wascak

Apparently it was more important to her than it was to Lucia’s pediatricians. The only alternative to her own milk that the doctors were offering was formula. “They didn’t have banked donor milk at the time. They have said that they are trying to get donor milk from a milk bank, but they’ve been saying that for years. They couldn’t do it. I tried.” 

Once Heather began chemotherapy, she began looking for breast milk from mothers within her community. Mary was instrumental in finding donors, collecting milk, and storing it for Heather:

“Since she started chemotherapy, she’s gotten so many donations of milk, we found a freezer for storage, and a few of us have been taking turns nursing her baby to keep her used to the breast while her mama undergoes treatment. Fortunately she’s on Reglan for the nausea, so her supply is still there. We’re hoping she will continue to lactate throughout treatment and we can keep the baby nursing until 30 days after her last treatment, when it will be safe to nurse again.”

As we sat in the shade of a giant oak tree, Heather looked at the women sitting around us, pointing to those who had shared their milk with Lucia and others who had breastfed her. “I also got 3,000 ounces of frozen milk shipped from a mother in California. I met her in another online breastfeeding support group I belonged to.”

Heather continued to pump and dump to try and maintain her milk supply during the cancer treatments. She pumped through the exhaustion, the daze of sleep deprivation, and the nausea. She pumped with the hope that one day, after chemo was done, she would be able to breastfeed Lucia. Despite heroic efforts, however, her milk slowly went away.

“There was a two week break in the chemo when I was allowed to breastfeed, but Lucia totally refused. She’d cry even if I just took my shirt off! I had milk, but…there just wasn’t enough and it didn’t come fast enough. But, Lucia has had only breast milk, mostly from other mothers. That was really important to me.”

That afternoon at the picnic, I watched as the other mamas doted on Lucia and Heather with deep affection. They had rallied around these two during such a difficult and tender time. These mothers, many with babies around the same age as Lucia, talked about sharing breastfeeding the same way other mothers talk about sharing baby clothes.

“When I had Judah, these guys all came over and breastfed him so I could have a few glasses of wine and my body to myself for a little while,” Mary laughed. “One time, I had friends over for drinks after the kids were in bed… the baby woke so I nursed him back to sleep. A few minutes later the 3 year old woke, so I put her back to sleep. When I finished there, I came out and Heather was lying in my bed with my son, who had woken again, nursing him back to sleep. Seriously, how amazing is it to have a friend who would do that for you? It’s special to have been able to so freely love one another’s children as our own.”

~*~

A couple of weeks after I returned home from my visit with Heather and her circle of friends I got a text from Mary:

“Good news I thought you’d be interested in, in case you didn’t know already. Heather is officially in remission and ready to relactate! She can still express drops manually, so we’re hoping that using a SNS, power pumping with a hospital grade pump and the Reglan (possibly getting Domperidone for longer term, since the Reglan is making her really tired) that she’ll be successful….”

Then she sent me this photo with the caption: “She nursed from both sides in less than 30 minutes of trying!”

When I saw it I choked up. “I feel like I want to cry,” I texted back.

“We were crying!” Mary replied, “She had really given up hope. I’m so happy for her I can’t even stand it. Everything she’s gone through and the idea of not breastfeeding her last child was worse for her, I think, than not being able to have more children.”

~*~

I had joined Mary’s online breastfeeding mothers’ group as way to stay in touch with everyone. It was one way to add some continuity and depth to my understanding of milk sharing in this community.

Photo: The Bossy Photographer

Every now and then, I saw posts from Heather pop up, mostly on topics about the many challenges that come with juggling a toddler and a newborn. I followed as she continued to struggle in re-establishing her milk supply.

Photo: The Bossy Photographer

Even with the SNS and donor milk, pumping, and the medications, Heather’s milk never fully came in. And, so there were requests for milk posted online and an outpouring of donations. The mothers in the group had given hundreds, if not thousands, of ounces of milk for Lucia.

Photo: The Bossy Photographer

And then, just a few days ago, a post from Heather flashed across my newsfeed. I felt like someone had punched me in the stomach. Her cancer was back. A CT scan had revealed more tumors. The prognosis was not good.

“It is with a very heavy heart that I am writing this post. After spending yesterday at Roswell, we have learned that my cancer has returned. I won’t get into all the medical stuff, but this is not good. At all. My chances of beating this terrible disease are not very good, especially with such a quick recurrence. I’m not laying down and giving up, but this will be the absolute fight of my life. I just cannot picture my kids growing up without their mom. I cannot picture my high school sweetheart and love of my life mourning me. I don’t want to think of my wonderful family and friends missing me. I would greatly appreciate positivity in our direction. And please don’t take your health and life for granted. xoxo”

~*~

I think Heather and Lucia’s story has so much to teach us about what milk sharing looks like in the everyday lives of mothers and babies. In this context, breast milk isn’t simply some kind of commodity. In this context, we see that milk sharing is about relationships between people who care for one another.

Milk sharing often grows out of the relationships formed within a community of breastfeeding mothers, and in return, the act of sharing milk strengthens these relationships.

Heather’s story teaches us that milk sharing is not simply about nourishing babies – sometimes it’s about mothers caring for other mothers, too.

Updated 9/7/15:  It is with the deepest sorrow that I write of Heather’s passing on September 6, 2015. She was an inspiration to everyone who knew her, and to those who knew her story. We will always remember her.

 

You can read more about Heather’s story here.

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