I Was Willing To Do Anything To Save My Baby. A Nurse Made A Suggestion That Almost Cost Me My Life.
When my daughter was only 5 weeks old, she stopped breathing in my arms. After a panicked drive to the emergency room, she tested positive for respiratory syncytial virus (RSV), a common respiratory virus that peaks in the winter months and which most people recover from after experiencing only mild cold-like symptoms.
Almost everyone has been infected by age 2. However, according to the Centers for Disease Control and Prevention, an estimated 58,000 to 80,000 children under the age of 5 are hospitalized each year due to complications caused by an RSV infection. Infants under 6 months of age are at the greatest risk for complications.
We learned my daughter’s breathing problem was RSV-induced apnea. The virus was causing bronchiolitis; the small airways in her lungs were inflamed and her immature brain was “forgetting” to breathe when breathing became difficult. She needed to stay in an isolated pediatric intensive care unit, hooked up to oxygen and closely monitored, until her body worked through the virus.
For eight days, I kept watch from a cot next to her crib. She received respiratory therapy twice a day and her apnea set off flashing red alarms around the clock. Twice I was told she might need to be put on a ventilator. With every alarm, I feared she was on the edge of death.
During those eight days, breastfeeding her became increasingly difficult. The wires and tubes wrapped around her tiny body paired with her shallow breathing made it almost impossible. The hospital sent lactation consultants to show me how to use a double breast pump. They said that if she wasn’t nursing enough, my milk would dry up. The doctors said she should start on formula, and I should pump every two hours. At that point, I didn’t care what I had to do or what the doctors had to do. I just wanted my baby to survive.
Once home, I was convinced I’d never sleep again for fear of more episodes of apnea. We purchased a specialized baby monitor with a pad of highly sensitive sensors slipped under her mattress that would set off an alarm if she stopped breathing.
For a week, the alarm went off at least two or three times a night. I drank mug after mug of lactation teas made of fenugreek, milk thistle and fennel. My daughter’s hunger increased, so after every nursing session, I offered her formula. My nipples were cracked and bleeding.
At my postpartum checkup, I told a nurse about our harrowing experience with RSV and my dwindling milk supply. Big tears fell on my paper gown as I explained how I felt like an absolute failure. She did not reassure me.
“Your breast milk has lifesaving antibodies. If you don’t produce enough now, your brain will stop signaling your body to make milk. You need to stay on top of this,” she said.
That was all I needed to hear. I wiped my face and nodded.
Yes, I will do anything for my baby to get better. Absolutely anything.
The nurse explained that there were medications I could take — medications that were not Food and Drug Administration approved for producing breast milk, but that could be taken “off label” because an unusual side effect was lactation. They were given to treat nausea and vomiting caused by certain drugs prescribed for Parkinson’s disease. She said the reason they weren’t FDA approved was because of a controversy around a small group of elderly people who were given the medication intravenously for Parkinson’s disease and then suffered cardiac arrest. She also said the formula companies didn’t want mothers to know about this medication: “You know how corporations are.”
I didn’t ask questions. I wasn’t old, I didn’t have Parkinson’s disease, and I wasn’t at risk for a heart attack.
The nurse handed me a prescription for domperidone and told me I couldn’t go to a chain pharmacy to have it filled — I needed a compounding pharmacy where a pharmacist would have access to the raw ingredients.
On that day in the exam room, if someone had drawn a map that directed me through a dark and craggy forest and told me to visit a 100-year-old witch who lived in a dilapidated cottage at the end of a 5-mile dirt road who could dip me in a magical potion that would allow rivers of milk to flow from my breasts, I would have done it. I would have walked hundreds of miles blindfolded. I would have slayed a dragon and collected its blood in a vial made from a unicorn horn. If my breast milk was going to save my baby’s life, I would have done whatever it took.
On my way out the door, she said, “The doctors don’t really understand how domperidone works, so if you have any questions, just call me.”
Finally, I had hope. I was to take 30-milligram capsules three times a day for two weeks, then call the nurse to check in. Every day I ingested 90 mg of domperidone and waited for the rivers of milk to flow. Instead, I was only met with trickles when the breast pump whirred to life. And when I nursed, my baby wailed in hunger because my body was “failing” to nourish her.
After a week on the drug, I began experiencing dizzy spells. They left me drenched in panicked sweat, my heart racing. Sometimes I lost my balance, bumping into counters and walls. I blamed it on sleep deprivation. My daughter’s apnea was less frequent, but her feedings were increasing. She was insatiable. And when I wasn’t pumping, I was trying to nurse. I was so focused on keeping my baby alive — my nervous system on high alert — that I ignored everything that was going on in my body.
After two weeks, I called the nurse. I told her I hadn’t noticed an increase in milk production.
“Are you sure you’re taking it three times a day?” she asked.
There was an accusatory tone in her voice. Was I being overly sensitive? Struggling to come down from the high-alert adrenaline rush of witnessing my baby struggle to breathe dozens of times?
“Just make sure you stay on it. You can’t stop taking it too quickly,” she warned.
I assumed she meant my milk could dry up. I didn’t ask her to elaborate. I didn’t ask questions and I didn’t do Google research. I was too busy keeping my baby alive.
For another eight weeks, I swallowed the capsules. And when the prescription ran out, I didn’t call the nurse or the compounding pharmacy. My daughter was now 4 months old. I had been supplementing with formula for over two months and her pediatrician was happy with her weight gain. More and more I fed her formula and less and less she got breast milk. I was ashamed and I felt like a failure, but my baby was alive and thriving. The magic capsules hadn’t worked, but the formula had.
Two days after the prescription ran out, I noticed I couldn’t push together the snaps on my daughter’s onesies after I changed her diaper. And over the course of a week, my hands grew increasingly weaker. I felt uncoordinated and I struggled to open a can of soup. It was as if I were wearing thick mittens on my hands all the time. I looked like a toddler when brushing my teeth or tying shoes.
I told myself it was all related to the physical changes that take place after nine months of pregnancy, childbirth and the exhaustion of life with a newborn. I developed insomnia. My baby was now sleeping better, but I was not. I’d lie in bed, restless and wide awake because the muscles in my arms and legs would twitch and spasm whenever I was resting. My mind raced in a way I had never experienced before. The whole left side of my body felt weak. I thought I might have had a stroke. Dark thoughts about our plaster ceiling falling, crushing both me and my baby, invaded my thoughts. I believed I was dying. I knew I was dying.
My husband convinced me to see a doctor. He drove to the emergency room where my left foot dragged across the linoleum of the exam room.
“I think this is neurological,” said the doctor, his voice serious. I was admitted overnight for testing and observation.
Over two weeks, I was examined by neurologists and had MRI scans. Doctors hooked electrodes and wires to my thighs and calves for nerve conduction studies, which made my muscles jump and tighten. They collected vials of blood to rule out mysterious viruses and infections. The left side of my body had muscle atrophy. For some reason, my nervous system was misfiring.
Doctors said they were ruling out demyelinating conditions like ALS or multiple sclerosis. Maybe it was Lyme disease. Possibly a tumor on the spinal cord.
All the tests were inconclusive. Multiple neurologists weighed in. One suggested I was suffering from postpartum depression; another said I probably had a conversion disorder caused by trauma and stress.
After doctors determined I wasn’t dying of a neurological disease, one finally asked me if I had recently stopped taking any medication. He was the first to suggest that my symptoms looked a lot like symptoms of withdrawal. It was only then that I mentioned I had been taking a “supplement” to help produce more breast milk but had stopped it a few weeks earlier because it hadn’t worked.
“This drug is blacklisted. And you were taking three times the recommended amount. How in the hell did you get it?” the doctor asked.
He determined that I had been not only experiencing symptoms of domperidone overdose, but once I abruptly stopped taking it, I was experiencing symptoms of withdrawal.
The pressure to breastfeed at all costs nearly cost me my life. Thankfully there was no formula shortage in 2012, so I was able to feed my baby. But I felt guilty about how much formula I was having to give her and shame because my body was “failing” to produce milk.
In December of 2023, the FDA released a warning about abruptly stopping the drug. There were no such warnings when it was given to me in 2012.
When you normally fill a prescription, it comes with pages and pages of fine-print literature explaining possible side effects. But because domperidone is not FDA approved for the production of breast milk, my prescription came with no paperwork. I was not instructed to taper my dosage, nor was I told to never stop cold turkey.
There are dozens of online forums dedicated to the discussion of domperidone. They are filled with success stories and horror stories and questions about dosing and side effects. It does work for some mothers, but for those whom it doesn’t work, they are often told, “take more.” If a regular over-the-counter allergy or pain medicine doesn’t work for you or causes adverse side effects, do you simply take more of it?
Without FDA approval on the drug for lactation, there isn’t extensive FDA research about side effects and possible complications for lactating mothers. In 2023, Health Canada launched a yearlong investigation into domperidone and its side effects for use when breastfeeding. But in the U.S, information has been scant. Instead, women have to wing it and guess at dosing. And they aren’t always given proper information about how to taper off the drug.
I physically recovered, but it required two months of physical and occupational therapy to fully regain my coordination and strength. The mental and emotional toll took years to work through.
I had been afraid my baby would die from RSV.
I felt shame over my inability to breastfeed.
I felt guilty over the need to feed her formula.
And now I was angry at having been pressured to take a drug in order to relieve the fear, shame and guilt. What I needed to hear when breastfeeding wasn’t going well after my daughter’s illness was, “You’ve been through hell. Feed her formula. It’s OK. You’re a good mom.”
My daughter is 12 years old now. She’s healthy and thriving. I’ve stayed quiet about this story because I was afraid of what people might think. But breaking the cycle of guilt and shame women feel about their bodies, about their pregnancies, and about their parenting choices is absolutely necessary. I’m on the other side of that craggy forest now and I refuse to wear the blindfold.
Kelsey Francis lives, teaches and writes in the Adirondack Mountains of upstate New York. Her essays have appeared in Adirondack Life Magazine, The New York Times, The Washington Post and elsewhere. You can read more of her work at kelseyfranciswrites.com.
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