Amber's interview
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How did all start?
This is for my baby. He was almost 12 months old when it began. It started as impetigo, a few small dots on his face. The next day, his eyes were swollen. By that night, he was covered in a sandpaper rash. The next day his arm pits began to burn.
Do you already have a diagnosis? How long did it take you to get it?
We went to the doctor 3 times before there was a correct diagnosis. And the diagnosis care when I spoke to children’s at Pittsburgh hospital and she said to take him to the emergency room.
For what medical specialties have you been treated? What has been the most useful specialty for your?
We asked several times for different doctors and to have him sent to children’s hospital. This was at Wheeling hospital. They would not transport him, said it would be the same treatment however, their treatment was very poor.
What has been the most useful thing for you so far?
Knowing that there are others out there reassures is that we are not alone in this. The whole thing has been very haunting.
What have been your biggest difficulties?
Getting doctors to listen. Also seeing our baby going through so much pain and knowing there’s nothing we could do.
How has your social and family environment reacted? Have your social or family relationships changed?
We were quarantined so no one could come to visit. When the baby was first released, he was still peeling pretty bad so people looked at him strange and the daycare was hesitant to have him come back. We had to get a doctors release to take him back to daycare.
What things have you stopped doing?
We have been clean people from the get go but now we sanatize our hone more to keep the staph at bay.
What do you think about the future?
The future for the baby looks very good however, we heard they can get it again and that makes us very anxious.
Finally, what advice would you give to a person in a similar situation?
Hold strong. Make sure you get the care your little one needs and don’t back down to nurses and doctors.
