**WARNING: this article contains graphic images of a medical condition
Warned she would never conceive after being burnt alive by a catastrophic reaction to epilepsy drugs, a young woman has revealed her joy at being just weeks away from giving birth to her miracle baby.
Danika Heron's nightmare began when she suddenly developed a mysterious rash just days before her 19th birthday in 2014—leading to a diagnosis of Stevens-Johnson syndrome (SJS), a grievous reaction to medication or infection, which affects the skin, mucous membranes, genitals and eyes.
Teetering on the brink of death, Danika's skin blistered and fell off, as her parents Carmen Heron, 48, and Scott Heron, 47, watched in horror, powerless to help their beloved girl.
Danika before she became illPA Real Life/Collect
After three weeks in hospital, Danika, now 24, of New South Wales, Australia, slowly rallied, but doctors warned that, due to the organ damage and internal scarring SJS had caused, she was probably infertile—leaving the young woman little option but to accept she would never be a mum.
Then, in December 2018, against all odds, to her delight, Danika discovered she was pregnant with a baby boy, which her mum, Carmen, has dubbed a “miracle."
Carmen, who does not work and is speaking out on behalf of her daughter who is legally deaf because of SJS, said:
“We call Danika our warrior, and her little boy our miracle."
Danika the day she became illPA Real Life/Collect
She continued:
“I get emotional even thinking about it. I'm just so excited for her."
“She is still dealing with the aftermath of SJS now, and I do worry and think, 'Is this the life she's going to have?' But now, it's not—she'll have a new life as a mum."
For Danika, who was an apprentice chef at a top Sydney restaurant when she became ill, but can no longer work, life changed forever in early 2014, when she was diagnosed with epilepsy.
Danika in hospital with SJSPA Real Life/Collect
Right away, she was placed on two drugs commonly prescribed to help manage seizures—levetiracetam, more commonly known as Keppra, and lamotrigine, sold under the brand name Lamictal.
While serious side effects are extremely rare, both drugs carry the risk of triggering a severe cutaneous adverse reaction—such as SJS—according to The National Institute for Health and Care Excellence (NICE).
At first, Danika appeared to be responding well to medication, until a pinprick-like rash appeared in May.
Danika in hospital with SJSPA Real Life/Collect
Carmen recalled:
“I knew right away that it was an allergic reaction, and so I took her to the doctor and asked them to change the medication she was on."
“They did, but it was already too late—the medication that had caused the reaction was in her system."
Over the next few days, Danika's rash spread, her lips swelled and her eyes appeared red and sore.
Worried sick, Carmen took her to the doctor's a few more times but, as SJS is so rare, it was simply thought she was suffering from something more common, such as chicken pox or the herpes simplex virus.
But thankfully, by complete chance, she was eventually seen by a doctor who knew a lot about the condition, and so spotted it right away, officially diagnosing her with a severe form of SJS known as toxic epidermal necrolysis (TEN).
Adding that doctors have since confirmed that the epilepsy medication sparked the adverse reaction, Carmen said:
“I had never heard of SJS before, but I remember googling it and bursting into tears. From there, Danika was admitted to the burns' unit at Concord Hospital in Sydney."
Danika on her 18th birthday before she became illPA Real Life/Collect
She continued:
“By then, she was screaming in agony. She was in so much pain, she was drifting in and out of consciousness."
“It was so traumatic. She doesn't remember much, which, in a way, I'm thankful for as it was so distressing for her."
As medics sprang into action, working around the clock to save Danika, Carmen became terrified she would not make it.
The ulcers on Danika's mouthPA Real Life/Collect
The day after she was admitted to hospital, it looked as if her worst fears would be realised when Danika suddenly stopped breathing.
Carmen explained:
“Her throat had swollen so much that she couldn't breathe. It was horrendous to watch. She was throwing up all this blood and skin."
“I really thought she was going to die."
While doctors managed to stabilize Danika, the condition continued to ravage her body, leaving the skin on her face, chest, back and arms so burnt that it fell away.
Danika in hospital with SJSPA Real Life/Collect
Her lips also swelled to the point where they burst and her mouth became covered in painful ulcers.
“Doctors told us it was one of the worst cases they had ever seen."
Carmen added:
“Danika was barely conscious most of the time, and had this button to press to get pain relief when it became too much."
“Her organs were failing and she had so much internal scarring. She was being burnt from the inside out. Her entire body was bandaged, and when the dressings were removed, her skin came away too."
Carmen and Danika in hospitalPA Real Life/Collect
Finally, after three weeks, Danika slowly began to rally and was discharged six days later.
But, her journey was far from over, as she was left with side-effects such as the loss of her hair and nails.
Her skin is still healing to this day and she also needs hearing aids as the insides of her ears are so scarred.
As well as the physical fallout, she is also fighting the emotional legacy of SJS, having suffered with post-traumatic stress disorder.
Said Carmen:
“We're still dealing with SJS—it didn't stop when we left hospital."
“Danika will have days where she feels incredibly low and struggles with flashbacks of being in hospital."
“Thankfully, if she feels that way, she will phone us right away. We have found that, as a family, it's good to talk rather than bottle everything up, however difficult those memories might be."
Carmen and Danika in April 2019PA Real Life/Collect
Another side-effect of Danika's ordeal was the warning by doctors that, due to the amount of internal scarring she had sustained, it was unlikely she would ever conceive.
According to the US Library of National Medicine, SJS and TEN often cause the tissue around the mucous membranes—which line various cavities in the body, including the eyes, ears, mouth, vagina and urethra, as well as covering the organs—to die.
As a result, women can experience vaginal lesions that lead to painful intercourse, difficulty conceiving and even infertility.
Danika in May 2019 whilst pregnantPA Real Life/Collect
Carmen explained:
“The doctors said they could refer her to a gynaecologist to run some tests, but she never went – I think she didn't want to hear the answers."
But, in December 2018, the Heron family received some news they thought they would never hear.
Carmen continued:
“Danika rang me crying. I immediately panicked and said, 'What's wrong?' She replied, 'I'm pregnant.' It was so emotional, neither of us could believe it."
Danika at her gender reveal partyPA Real Life/Collect
Carmen continued:
“She's going to be such an incredible mother. I'm so happy for her and her partner Jordan, who she's been with for three years."
“She's classed as a high risk pregnancy, and has been struggling a lot with hip pain, but we had a scan recently and her little boy, who is due in July, looks healthy and perfect."
Now, as Danika prepares to welcome her miracle boy into the world in a matter of weeks, she and Carmen are determined to raise awareness of SJS and TEN.
Danika and Carmen at her gender reveal partyPA Real Life/Collect
Carmen concluded:
“It's terrifying how many people are affected by this worldwide. If sharing our story helps just one person, I'll keep going."
“All we want is for that awareness to be out there. I'd urge people to be aware of their medication and push for tests as soon as they notice a rash. Don't let yourself get sent home and told it's nothing."
“I'm thankful every day that we pushed for Danika to be checked over and over again. If we hadn't she might not be here now."
