We often talk about ‘choice’ like it’s something we all have. But like good health, it can be completely overlooked until it’s taken away from us. In Emily Smith’s case, both her health and her choice to breastfeed were called dramatically into question right when she should have been enjoying the exhausting, but exhilarating first few months as a new mum.
Instead, Emily was on the transplant register awaiting a new heart.
Calm, measured and articulate, Emily Smith wants you to know about Peripartum Cardiomyopathy. If you haven’t heard of it, it’s because it’s so uncommon it doesn’t rate a mention unless you have a pre-existing heart condition - something Emily is keen to change. “You don’t think you can go into heart failure from having a baby - but I did,” she says. She wants expectant mums to be told about the disease in their obstetrician appointments as it can be triggered by stress on the body brought on by pregnancy.
With no family history of heart disease, it wasn’t until she hemorrhaged nearly 2L of blood after giving birth to her little boy Hudson, that both her and her doctors knew something wasn’t right. With the world firmly in the grip of a global pandemic and the knock on effect this had with our hospitals, it wasn’t until many weeks later that the full story would unfold through a series of telehealth calls, CT scans, cardiograms, hospital visits and eventually, surgery.
While doctors were able to stem the bleed post-birth, Emily’s heart-rate never really went down to ‘normal’, but lowered enough to be released from hospital. 6 weeks after birth, Emily’s post-partum exhaustion was in fact, Parainfluenza. After a subsequent telehealth call advised her she might have a potential lung clot, eventually she was scheduled to see a cardiologist.
Emily’s condition deteriorated and she was transferred from John Hunter Hospital in Newcastle to St Vincent’s Hospital in Sydney where she was diagnosed with Peripartum Cardiomyopathy that doctors hoped could be medically managed.
During her time at John Hunter Hospital, Emily was able to keep Hudson by her side. However, Emily’s milk had started to dry up because of what she believed to be the Parainfluenza. Her sister - an avid follower of Supermarket Swap, gently suggested introducing formula feeds, which enabled her fiance to take on full-time parenting duties while Emily, now at St Vincent’s was bed-ridden, asymptomatic to everything and 2 days later placed on the heart register.
“In a strange way, COVID helped me mentally with not seeing Hudson,” Emily recalls of her ordeal. “As tough as it was, I knew it was safer for him away from the hospital,” she says. Her partner Dylan, mum, mother-in-law and Hudson were granted exemption to travel to Sydney to be close by, and 1 week and 1 day after being placed on the register (and after missing a series of phonecalls at 8:45pm) Emily took the call they’d all been desperate to hear.
“We’re just ringing to let you know we have a heart. We have to do testing on it, but it’s looking good. Surgery is scheduled for 8 am - try and get a good rest.”
With unwavering faith in her medical team, Emily had no fear of not making it through surgery - having Hudson gave her the extra motivation needed to face the biggest hurdle of her life. “I remember Dylan walking me down to the floor and saying bye to him and thinking to myself ‘see you on the otherside, boys’, “ she recalls.
Now, Emily is the bravest of hearts - wearing the battlescars of surgery with pride as she works through an arsenal of 30 tablets a day, including steroids and vitamins. She will be on anti-rejection medicine for the rest of her life, designed to keep her earthside to do the job she was born to do: raise her beautiful boy.
Forever immunocompromised, Emily is susceptible to getting sick or getting cancers. Life right now is approached with care and caution as she tries to carry on with the everyday in this ‘new normal’, running for mental health and fitness and planning her April nuptials.
Grateful for her transplant and skilled, dedicated heart team, Emily is also frank about what she’s lost: the chance to breastfeed and have another baby. Despite all this, Emily is fiercely outspoken in her quest to raise awareness of the disease and shares these symptoms to help educate us all.
What is Peripartum Cardiomyopathy?
A disease of the heart muscle that weakens its ability to pump blood around the body effectively. Pregnancy can put a strain on the heart if you already have cardiomyopathy or it can cause cardiomyopathy.
National Heart Foundation of Australia