Doctors told us our newborn's grunting was just normal 'baby noise'... but now she is on life support
It seems like every parent's nightmare - but it was a reality for Stephanie Mulhall-Atkinson, 37, and Justin Atkinson, 33.
The couple, from Canada, welcomed their daughter, Sloane, in October 2024, and immediately after her birth, they noticed the newborn was making strange 'noises' that sounded like she was 'grunting.'
But doctors assured them that she was just extra vocal, declared Sloane as 'perfectly healthy,' and 'released her without any concern.'
Six weeks later, Stephanie and Justin watched their daughter go from 'a happy, smiley, and chatty' baby to 'intubated in the PICU' and fighting for her life.
While chatting with the Daily Mail about the horrific ordeal, Stephanie explained, 'We raised concern [about her grunting noises] to many different doctors and nurses while we were in the hospital for five days post-birth, including the pediatrician.
'They all said that her lungs sounded clear so she was fine and that she was just a vocal baby making normal baby sounds.'
The grunting didn't stop after they brought Sloane home, but Stephanie just assumed it was normal baby gargling because that's what the hospital doctors had told her.
'We were told that it was just her baby noises and that she was very vocal,' she explained.
But Sloane began to develop other symptoms. She was sometimes sweaty and seemed extra fussy any time she was held.
And when she was about six-and-a-half weeks old, things took a drastic turn when the infant suddenly stopped eating.
Stephanie and Justin also noticed a 'very faint blue tint around her mouth,' so they took her to the emergency room.
'[When we got there] she was making her grunting noises. As soon as the doctors heard the noises they asked if she had always done that and we said yes and that we were told it was just her normal baby noise,' recalled Stephanie.
'We were then told that it actually is a sign of distress and not normal at all. Everything escalated from there.'
Doctors rushed to do tests on the youngster to figure out what was wrong, and they then got the heartbreaking news that Sloane's heart was not working properly.
'They performed an echocardiogram to get a picture of her heart and as soon as the image popped up on the screen we saw the look of "I knew it" on the ER doctor's face,' Stephanie continued.
'"Her heart is barely pumping" is all we really remember hearing. She was rushed up to the PICU, sedated and intubated immediately.'
Stephanie and Justin soon learned that their newborn was battling something known as dilated cardiomyopathy, which was caused by a 'genetic mutation.'
It meant her heart was 'very enlarged' and 'unable to pump hard enough on its own.'
They were told she was in end stage heart failure and that she would require a heart transplant to survive.
'There are no words to describe those first acute days and weeks and hearing that your tiny baby needs a heart transplant,' Stephanie said.
'It was an out of body experience. Your brain cannot comprehend that.'
They were especially 'devastated and angry' that the doctors after she gave birth had been so dismissive, which meant their little Sloane had spent weeks in distress.
'For the six weeks we had her home we just thought her noises were cute. Finding out that it meant she had been in distress that whole time was unbearable,' Stephanie scathed.
'It should have raised red flags [with the doctors] because [we now know that] grunting a sign of distress in babies.'
Sloane is now on a life support device and has been living in the hospital for the past seven months while awaiting her transplant.
Stephanie and Justin have raised over $25,000 on GoFundMe, which has made it possible for them to be by her side every step of the way.
'Thanks to the support we have received financially we've been able to both take time off from working and completely focus our attention on her,' shared Stephanie.
And she revealed that her daughter is 'thriving' all things considered.
'The device has allowed her to grow and develop "normally." She is the happiest baby EVER and she truly is thriving,' the mom-of-one concluded.
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