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[This story was first published on January 30, 2014.]
Izzy was born a healthy beautiful little girl who was always happy and very fun loving.
I remember when Izzy got sick like it was yesterday. She was 18 months old at the time. Our day care centre had flooded that week with the heavy rain and was closed for the remainder of the week, so I decided to use this opportunity to get her immunizations up-to- date.
Everything seemed fine, but 2 days later Izzy’s eyes started to look swollen and red spots started to appear, so I took her to our local doctor who diagnosed foot and mouth and conjunctivitis.
The next morning I woke up to her crying and frothing at the mouth and her face was covered in a red rash.
I raced her to the Royal Children’s Hospital’s emergency and by the end of the day she was admitted onto an empty wing in case whatever she had might be contagious.
At 11.00pm the doctor phoned our room from his home. He had been researching all day and informed us that Izzy was having a severe allergic reaction to her vaccination which was causing Stevens-Johnson Syndrome. I can remember our conversation so clearly! He just kept saying how sorry he was. I had never heard of SJS and was not sure why he was so sorry, but it was freaking me out. I got onto my iPad and looked it up. As soon as I saw the mortality rate, I turned it off.
Stevens-Johnson Syndrome is a rare, serious disorder in which one’s skin and mucous membranes react severely to a medication or infection. SJS is most often from medicine containing Ibuprofen such as Nurofen, or from sulphur-based treatments, from many antibiotics, or from anti-seizure medicine, and more rarely from vaccinations as in Izzy’s case, whose reaction was to the DTaP vaccine. What is unnerving is that one can have these medications for years without any problems and then for some unknown reason one’s body will react in this way due to having been hyper-sensitised, this irrespective of one’s age.
Stevens-Johnson Syndrome often begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of one’s skin to die and shed. My daughter was basically burning from the inside out and her skin came off. She had to be intubated and placed in an induced coma to ensure her oesophagus didn’t close up, as with burn patients.
Izzy spent the next two weeks in the ICU at the RCH in Melbourne while they worked on saving her life.
One night they called and told me to come straight in as they didn’t think she would make it through the night. I have never felt so sick with fear. I stayed by her side, pleading to the heavens to let her live, even if that meant that I had to be willing to sacrifice her eye sight in exchange for her life.
It was like my prayers were heard and accepted. She was eventually moved to the burns ward for the next 3 months and nursed back to health. She had to learn to walk and to eat again. Thankfully, her skin grew back with minimal scarring. Her corneas were however stuck as if glued to her eyelids.
They required an intensive operation at the Eye and Ear Hospital to separate the eye from the lid without piercing the cornea. Amazingly, the corneal specialists managed to do this successfully.
Two months later she accidentally poked her glasses into her eye and perforated it. This required an emergency corneal transplant. I cried throughout the day for Izzy and also because the cornea was donated by a little child who had died that day. That a suffering family in their time of despair had the generosity to give such a gift to someone to someone was so beautiful. I think of them often and wish they knew that a part of their child was making such a great difference to my little girl.
Izzy has however sustained irreversible scarring to the corneas and as such is now blind and can only see high-contrast colour and movement. She wears protective glasses 24/7 so as not to damage her eye again.
Her right eye is still stuck down to the eyelid and she won’t have any vision from it until operated on, sometime in the near future. The operations won’t be without risk, as operating on the eye could inflame the left eye and take what little sight she does have. Essentially, we are between a rock and a hard place with this one.
Izzy is on daily immune suppression medication for her transplant. She has had so many operations I have lost count, but she continues to be a brave, smiley and happy girl. In addition to all of this she suffers from photophobia (intolerance to light) and Dry-Eye Syndrome which requires constant ointment and drops in her eyes for the rest of her life. She is in constant pain as her eyes feel gritty, as if she had sand in them all the time.
It has been a real struggle dealing with this and just getting through each day, but I stop feeling sorry for myself when I see how amazing Izzy is and how she just gets out there and tries everything, wanting to be just like her older sister.
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Our thanks to Dr. William Makis for bringing this to our attention.
All images in this article are from VIN
