Not just a bad sleeper: how toddler's nighttime wakings led to heart surgery

Sophie will undergo heart surgery in two weeks time. Photos: Supplied
Sophie will undergo heart surgery in two weeks time. Photos: Supplied 

Amy Bolas' daughter, Sophie, has never been a "good" sleeper. After bringing her first baby home from hospital 20 months ago, Ms Bolas kept Sophie beside her in bed, finding this much easier than getting up endlessly through the night.

But as a single mum, with little support, the night waking has taken its toll on Ms Bolas.

"For the first three months of her life earthside, she would only sleep in my arms.  She will wake up six to twelve plus times a night," Ms Bolas says.

In October last year Ms Bolas reached out for help on a Facebook group saying she was at "rock bottom".

Amy had tried everything from allergy testing to massage, cranial therapy, even dancing before bedtime and of course the GP.

"I tried a vegan/no caffeine/no processed foods/completely wholefoods/no alcohol/no soy diet for almost four months religiously.  Crystals by the bed, changed direction of the bed, car rides. What is left.  I mean honestly, what the f*** is left to try?" Amy wrote to the group.

In April this year Ms Bolas and Sophie were checked in to a hospital sleep clinic. Mum and baby spent four nights at the clinic and returned home with sleep still eluding Sophie.

"Even they (nurses at the clinic) remarked that she gets upset very quickly and very upset," Ms Bolas says. "I was told that if I stuck with it for at least three weeks I would see a change." 

Six weeks later, after no improvement in Sophie's sleep,  Ms Bolas visited her GP and was given a referral to a paediatrician. The doctor listened to Sophie's heart and heard a murmur.

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"I started crying and she apologised, realising I had no idea," Ms Bolas says.

A cardiologist confirmed Sophie has a 20mm hole in her heart, which will grow as she grows. Sophie is now booked in for open heart surgery to fix the hole on July 13.

Ms Bolas says it has been a relief to have an answer and while she understands the surgery may not change Sophie's sleep patterns, she doesn't feel the distress that she did feel every time she woke up.

"I am just grateful that she is here," Ms Bolas says. "It has given me a reality check."

"If you keep thinking that something is not right, feeling deep within that it's not okay, but people keep telling you that it's normal, don't listen to them.  Change your GP, get a referral to a paediatrician, get a second opinion.  Reach out to someone."