'Nobody would listen to me': how breastmilk helped diagnose new mum's brain tumour

Erin Simmonds and baby Pia. Photos: Supplied
Erin Simmonds and baby Pia. Photos: Supplied 

Just a couple a hours after Erin Simmonds gave birth to her first child, she told a nurse she thought her milk had come in.

"She looked at me and said 'impossible', and then she saw it had," the 36-year-old Brisbane mum remembers. "Straight away my boobs were big, and I knew I had milk."

However, advice from another nurse to only feed baby Pia for twenty minutes every three hours left Ms Simmonds with a screaming baby and extremely sore breasts.

One day while Ms Simmonds was talking to the owner of a health food shop a woman overheard her and told her a breastfed baby shouldn't be screaming like that.

"She said she was a GP and lactation consultant.  She seemed to know what she was talking about and told me to just feed her.  She said, 'don't watch the clock, listen to your baby and just feed her'," Ms Simmonds says.

Despite feeding her baby regularly now, Ms Simmonds' breasts continued to become engorged and painful.

The new mum continued to visit the GP she'd met in the shop who said she didn't understand why Ms Simmonds still had so much milk and asked if she was pumping. Then out of the blue she told Ms Simmonds she thought she had a brain tumour.

"I laughed because I thought she wasn't serious. Then I realised she was serious," Ms Simmonds says. "She said I needed to have an MRI.

"I sat there kind of numb. It had been a really tough start for Pia and me. I was just finally getting through that newborn haze. 

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"I got in the car and called my husband and said the doctor thinks I've got a brain tumour."

The MRI confirmed Erin had a non-cancerous pituitary tumour, which was impacting on her hormones and causing her to produce copious amounts of milk.

"Initially I didn't know what it meant.  We'd just had a new baby.  It was horrible. I remember putting her to bed one night and standing outside and crying and crying. It was pretty overwhelming."

A family GP told her she'd need to stop breastfeeding and have surgery to remove the tumour, but Ms Simmonds returned to the doctor who had diagnosed the tumour who told her to keep breastfeeding and be monitored. 

She had regular appointments with an endocrinologist to measure hormone levels and monthly MRIs.

After about 18 months the scans showed the tumour had disappeared, but Ms Simmonds' milk supply continued to be strong.

Her endocrinologist had no idea how she would stop lactating and neither did several doctors.  Her original doctor had at this stage moved to Melbourne.

"Finally, after seeing a lot of GPs, one said he could see how much pain I was in and said I would need medication to stop the supply.  He said I may never stop lactating.  I may be 80 and still lactating.  So that was something I had to get my head around as well."

Ms Simmonds weaned Pia when she two years and eight months.  The medication, should have stopped her supply, but instead had only slowed it so once Pia stopped breastfeeding. Ms Simmonds had to increase the medication.

About 18 months after she stopped breastfeeding her breasts became engorged and she started lactating again.

"It just came on really suddenly.  All of a sudden, I looked like Dolly Parton again.  I honestly thought, 'what the hell'.  I said to my husband, 'look at this I've got milk again'," Ms Simmonds says.  "I even said to my daughter, who was four, 'do you want some milk?'."

The doctor advised Erin to take the medication again, which stopped the milk after a couple of days.

Doctors think the pregnancy hormones caused the tumour and have told her if she had another child it could possibly happen again.

"This has certainly played a factor in us choosing to only have one child.  But doctors don't really know," Erin said.