Women’s Health Today

A baby’s legacy in her mother’s compassionate act of lactation and donation of breast milk after the loss of her baby. Published with the gracious consent of the author Joanne Deering, Bettystown, Co. Meath, Ireland.

We had thought about having a third baby for a long time and were thrilled when I became pregnant quite quickly. I completed my training as a breastfeeding counselor with Cuidiu, a parenting organization in Ireland, and felt so excited and confident about breastfeeding a newborn again in a few months’ time.

My pregnancy was healthy and progressed just as my pregnancies had with my first two babies. There was no indication that anything was wrong. We had no idea what was going to happen. We shared the most beautiful moments of sheer joy and exhilaration after a spontaneous, natural delivery when we cuddled and welcomed our 8 lb 6 oz pink and wriggly new baby girl and named her Olivia. That time was short, innocent, and perfect.

I often think about my pregnancy with Olivia and those precious moments after her birth. Before she turned blue, before she was whisked out of my arms, and disappeared into the NICU. I wonder where my gut instinct, my mother’s intuition, was. How did I not know something was terribly wrong? Maybe I was being protected from the horror of the reality that would unfold. Maybe it was simply one of Olivia’s many gifts to us—the gift of happiness, of such excitement that we were going to become a family of five. We all relished her kicks, watched her wriggle inside my tummy, placed our hands on my ever expanding bump, blissfully unaware that by the end of the year she would no longer be with us.

While Olivia was being tended to in the Neonatal Intensive Care Unit, my husband held my hand as we waited outside, terrified, longing for news. I felt sick. My chest was tight. I had just given birth. I should have been tucked up in bed cuddling my hours-old daughter skin to skin, and marveling at how I had forgotten what it was like to breastfeed a newborn all over again. But I wasn’t. I was outside the NICU, panic stricken, feeling dizzy, and weak after having just given birth, separated from my daughter, and clutching a bottle of colostrum that I had just hand expressed. I had no idea what was happening to my gorgeous little girl. I glanced at a poster on the wall: there was my name and telephone number in black and white, taunting me. My contact details were there for new breastfeeding mothers to call should they need support or information. I felt like such a fraud. What help could I be to anyone now?

When we were finally allowed in to see Olivia, she was in an incubator, with a cpap (continuous positive airway pressure) machine giving oxygen support through her nose, probes on her head measuring her brain activity, and an umbilical line in where her umbilical cord stump had been the last time I had seen her. Probes were monitoring her heart rate and oxygen levels. Alarms were ringing, while Olivia was lying there naked and sedated. She was very seriously ill but nobody could tell me what was wrong. Nobody knew. I asked could I hold her but I was told an emphatic “No!” All my knowledge of Kangaroo Mother Care, skin-to-skin contact being best for babies, especially for those in an incubator, was useless right then, insignificant. I longed to hold her, comfort her, but I couldn’t, wouldn’t go against the doctors for fear of compromising her in any way. I was terrified. After scrubbing my hands, I gingerly slid them through the little plastic doors at the side of the incubator. I was shaking, petrified I would catch my finger in a wire and hurt her in some way. I slowly reached in and gently touched her little leg with one hand, and her shoulder with the other.

All my experience as a mother, my training as a breastfeeding counselor went out the window. I didn’t have a script for what to do next. I felt surplus to requirements, insignificant, the doctors and nurses were the ones who were looking after her. But she was my daughter and I was her mother. There was one thing I could do for her that nobody else could. I could express my milk for her to have in her feeding tube. I asked for some bottles and I set to work hand expressing colostrum. I was determined that she would be exclusively breastfed and if she couldn’t feed just now she could be given my colostrum as soon as she was ready. I believed, hoped that once she was ready to come out of the incubator, I would be able to breastfeed her. It was not to be.

Olivia was unable to suck or swallow. She was never going to be able to breastfeed or feed at all. It is hard to describe the devastation I felt at this realization. Not only was she very ill with specific medical needs, she was unable to take comfort at her mother’s breast in the most natural, instinctive way. I couldn’t comfort or nourish her the way my postnatal body expected to, the way I longed to. I was a breastfeeding counselor who couldn’t even breastfeed her own baby. But I could give her the milk my body made especially for her. I set alarms, downloaded an app designed to track milk production, and pumping for Olivia became my focus.

Her dad and I followed the ambulance as she was transferred, at five days old, to the Children’s Hospital in Dublin. Her empty car seat was safely latched in the back of our car, a large cooler bag full of frozen breast milk on the seat beside it. A birth injury was ruled out and a genetic cause deemed most likely. A battery of tests was ordered and carried out. Nobody knew what was wrong. Once she had settled in, Olivia had, medically, a relatively stable few weeks when we could hold her. I became adept at pumping and cuddling her at the same time, all the while negotiating the various tubes and wires that connected her to the machines supporting and monitoring her.

Her dad and I were running on adrenaline trying to come to terms with Olivia’s illness and what our future held, pumping milk, looking after her big brother and sister, and also explaining to them why their baby sister couldn’t come home yet. We awaited results. We were hopeful. I imagined taking her home, wearing her in her sling, with her suctioning equipment safely tucked into a bag on my back. I pictured the five of us as a regular family, all together at home. But it was just a dream. When she was four weeks old, her condition suddenly deteriorated and she was placed on life support. Her doctors gathered around her bedside to give us the devastating news no parent ever wants to hear. She was dying. They had no official diagnosis for her condition and they still don’t, after more than a year of tests. It was not genetic but due to something that ‘just happened’ during pregnancy—something undetectable, unpredictable, and unpreventable. At the time, they knew only that our darling daughter had weeks, if not days, to live. It felt like we were transported to another world, like we were watching ourselves in an episode of Gray’s Anatomy.

Olivia gave us the gift of two more weeks with her, time to come to terms with her prognosis, to accept that this was her path. She gave us time to prepare her seven-year-old brother and four-year-old sister, to explain to them that their baby sister would never be coming home. It was heart-breaking. We wished that the doctors were wrong, hoped they had made a mistake. But they hadn’t. We brought the children in to have their last cuddles with Olivia, and we shared our final moments together as a family of five.

Hours before she died, I said to the head nurse that I wished to donate Olivia’s milk. She rang the milk bank and organized for me to have the required blood test done, right there in Olivia’s hospital room, and to have it sent ahead of time to the milk bank. I had already answered the potential donor’s questionnaire over the phone and had received my box to ship the milk. I had planned all along to donate her surplus milk as she wasn’t on full feeds and my freezer stash was growing bigger every day. I had no idea that I would be donating because Olivia was going to die.

That night my baby daughter closed her eyes for the last time. She was skin to skin on my chest as I lay back and cradled her in a biological nurturing position. Her oxygen saturations had been dropping, her heart rate dipping. She was dying. The monitors were turned off so our last few hours together would be peaceful, just Olivia, her dad, and me.

Shortly after she passed away, my husband sat beside me cradling Olivia’s lifeless body. The room was silent now, no beeping monitors, no swishing sound of her oxygen flowing from the pump in through her nasal prongs breathing in life, just the whirring of the breast pump as I sat down to express Olivia’s breast milk, milk she would never need again, never drink. The tears flowed as freely down our faces as the milk flowed from my breasts. We struggled to see each other, and Olivia, through our tears. We dressed her in a beautiful pink dress. Her face was finally free of the tubes and the tape that had supported her, and she looked so peaceful and so beautiful. It was the first time we had seen her whole face since she went to the NICU.

I said to my husband that I wasn’t going to stop pumping. He simply said, “I know!” Trying to explain why is almost like answering the question, “Why did you choose to breastfeed?” It is no one particular reason and so many reasons all at once. Moms with babies in the NICU work so hard to have a supply of breast milk for their babies. I had already done that work and had a full supply established. It felt wrong to me to contemplate suppressing it when I knew the milk bank was always looking for donations. We couldn’t donate Olivia’s organs but I could donate her milk. It felt like the right thing for me to do, a way of creating something positive out of Olivia’s devastating loss.

Expressing and donating were healing to me in so many ways as I navigated the early months of grief. Having her milk to express kept her alive in me in a way. It was as if my body did not know she had died and I found this comforting. It validated who I was, a postnatal mother with a body still soft after giving birth, with breasts still capable of nourishing my beautiful newborn baby. It allowed me to come to terms with her death while protecting me from the potential hormonal crash that can come with early weaning. I grieved but I wasn’t depressed, and I attribute that in part to my expressing. I feel that releasing those relaxing, loving breastfeeding hormones, especially oxytocin, a number of times a day, along with expressing being a meaningful task to do every day, played a huge role in preventing postpartum depression for me. I did not set myself any goal, I simply felt I would continue to express for as long as it made sense to me to do so. In the end, the milk bank’s policy of limiting donations to seven months after birth—when Olivia would have been seven months old—felt like the right time for me to stop expressing completely.

Thirty-eight sick and premature babies in hospitals all over the island of Ireland who were prescribed donor breast milk received Olivia’s. Knowing that her milk helped other tiny, sick babies to heal, to survive, and to thrive is incredibly comforting to me, my husband, and our older children. Olivia’s life both within my womb and on the outside brought so much joy, such heartbreak, but also incredible healing.

How can someone so small, who lived for such a short time make such a tremendous impact on the world? At the funeral service, Olivia’s dad read “Dear Parents” by Irish poet Christy Kenneally and though it was not the life we had dreamed for her, it was her life and she made it matter.

Reference

Kenneally, C. Dear Parents written to mark the tenth anniversary of ISANDS.

Resources

Human Milk Banking Association of North America

Sriraman, N.K., Evans, A.E., Lawrence, R., Noble, R., & the Academy of Breastfeeding Medicine’s Board of Directors. (2017). Academy of Breastfeeding Medicine’s 2017 Position Statement on Informal Breast Milk Sharing for the Term Healthy Infant. Breastfeeding Medicine, 13(1)1–3. doi 10.1089/bfm.2017.29064.nks

UKAMB

Support organizations

International Stillbirth Alliance

Sands—Stillbirth and Neonatal Death Society

Share Pregnancy & Infant Loss Support