tobytough's interview
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How did all start?
The symptoms began during pregnancy, with low amniotic fluid and Baby very small for gestational age.
Do you already have a diagnosis? How long did it take you to get it?
We did not receive the diagnosis immediately because the disorder was not identified before Baby was a year old. Until then, his symptoms baffled doctors and he spent most of his life in the hospital with various infections.
For what medical specialties have you been treated? What has been the most useful specialty for your?
We had numerous specialists working with our baby. Pulmonology was a major part of his care, due to frequent respiratory infections and continuous need for oxygen therapy. Other specialists were urology, endocrinology, gastroenterology, cardiology, neurology, ENT, immunology, and later, hematology and renal care specialists.
What has been the most useful thing for you so far?
Advocating for my child meant learning all there was to know and becoming an active part of his medical team. The parent knows their child better than any of the physicians, so it's important not to be intimidated and to work cooperatively to manage his care.
What have been your biggest difficulties?
Learning about the disorder without any medical background and trying to resolve conflicts with nurses and doctors who did not take concerns seriously. As MIRAGE syndrome becomes more recognized and understood, I hope that parents will not have the same struggles I did in seeking treatment.
How has your social and family environment reacted? Have your social or family relationships changed?
Our baby was so sick and his immune system was so fragile, and we were often forced to isolate ourselves from friends and family. Also, people didn't understand his illness and they were naturally uncomfortable or even scared around him. With four other children who were healthy, it was very difficult to devote time to them and engage in their interests and activities. This made for a very stressful family dynamic. We were all walking on eggshells.
What things have you stopped doing?
We limited our time in public places. We lost a lot of sleep. We stopped planning ahead and lived more in the moment, day by day.
What do you think about the future?
We lost our baby in January 2017. It has been extremely difficult to get back to where we were before -- and, honestly, maybe we can never get to that point and will simply need to move forward from where we are. However, I am motivated to search for other families to offer support as well as to learn more about the disorder, to help to come up with successful treatment plans that will allow our children to live happy lives despite having MIRAGE. I am working with doctors and researchers to this end, and I am connected with several families already who are in varying stages of the disease, ranging from infants to 12 years old.
Finally, what advice would you give to a person in a similar situation?
Learn, learn, learn. There is so much to this disorder that hasn't been published, partly because of the shorter lifespans of the study participants. Learn about your child so that you can best advocate for him or her.
