Page 9 - HFA Dateline 2014 Q3 Fall
P. 9
DINA and DAVIE continued…
less; one son battling an inhibitor and another fighting a port infection was incredibly taxing. All Dina could do was pray that
everything got better for both of her sons, and soon.
This nightmare occurred 2 years ago. Even though Davie’s inhibitor tolerized, Dina worries about it returning with every
bleed. What’s more, she lives in fear of Mark developing his own inhibitor. She also wonders if the inhibitor could have been
avoided had her HTC listened to her on that long ago night.
JANIE and JOE: The Sequel
(Continued from our spring issue. Janie’s son, Joe, has struggled with an inhibitor. Joe’s HTC refused to test until Janie was
able to convince a nurse to do run an inhibitor test on the sly.)
On the same day that Joe’s inhibitor was diagnosed, I called the HTC social worker to try and get my son access to a home-
school teacher. She informed me that this was what “caused” the inhibitor; my son hated going to school and so, to stay home,
continually lied to me about bleeds, leading me to overdose him with factor and triggering his inhibitor. She further stated
that I was de-socializing him and intimated that homeschooling would cost thousands of dollars, especially once factoring
in the qualifications process.
After I had slightly recovered from those verbal hits, she told me that my son didn’t qualify for medically-necessary home-
schooling. I tried to explain that this was impossible; not only had Joe’s body had begun to swell again, but we were totally off
factor. More importantly, the doctor had already prescribed homeschooling because the he felt Joe would need it. In the end,
she only reiterated that I had caused Joe’s inhibitor, and that my mistrust of the HTC was appalling, suggesting that I go to
another HTC since the whole staff at this one was tired of me and my complaints.
When the nurse got on the phone, I repeated what the social worker had said and the social worker, now easily heard in the
background of the call, flatly denied having ever said
any of it. She simply said she’d mentioned cases where
someone had developed an inhibitor after infusing 120
times. Crying, I told them both that if I were capable
of so injuring my son — even unknowingly — that they
should relieve me of my parenting responsibilities. The
nurse stated this wasn’t so, revisited the study.
Given the Social worker’s actions and demeanor, I re-
searched the complaint process of the hospital and
expressed my concerns with the social worker. When
I received a response, I was directed to a specific per-
son who would address the issue. Unfortunately, I heard
no response from this individual, and tried to start the
complaint process anew. Receiving a call from the same
person who handled my first complaint, I notice that she
seemed colder. She was not personable and addressed
me by last name only — the total opposite was true of
the initial call back. She stated that she’d talked to the
social worker’s superior, who I learned was the nurse to
whom she’d lied about our conversation, the same nurse
who had secretly taken the inhibitor test. It became clear
to me: she lied to her boss because she had been, at the
very least, unethical (not to mention cruel).
continued on next page…
Fall 2014 | Dateline Federation 9
less; one son battling an inhibitor and another fighting a port infection was incredibly taxing. All Dina could do was pray that
everything got better for both of her sons, and soon.
This nightmare occurred 2 years ago. Even though Davie’s inhibitor tolerized, Dina worries about it returning with every
bleed. What’s more, she lives in fear of Mark developing his own inhibitor. She also wonders if the inhibitor could have been
avoided had her HTC listened to her on that long ago night.
JANIE and JOE: The Sequel
(Continued from our spring issue. Janie’s son, Joe, has struggled with an inhibitor. Joe’s HTC refused to test until Janie was
able to convince a nurse to do run an inhibitor test on the sly.)
On the same day that Joe’s inhibitor was diagnosed, I called the HTC social worker to try and get my son access to a home-
school teacher. She informed me that this was what “caused” the inhibitor; my son hated going to school and so, to stay home,
continually lied to me about bleeds, leading me to overdose him with factor and triggering his inhibitor. She further stated
that I was de-socializing him and intimated that homeschooling would cost thousands of dollars, especially once factoring
in the qualifications process.
After I had slightly recovered from those verbal hits, she told me that my son didn’t qualify for medically-necessary home-
schooling. I tried to explain that this was impossible; not only had Joe’s body had begun to swell again, but we were totally off
factor. More importantly, the doctor had already prescribed homeschooling because the he felt Joe would need it. In the end,
she only reiterated that I had caused Joe’s inhibitor, and that my mistrust of the HTC was appalling, suggesting that I go to
another HTC since the whole staff at this one was tired of me and my complaints.
When the nurse got on the phone, I repeated what the social worker had said and the social worker, now easily heard in the
background of the call, flatly denied having ever said
any of it. She simply said she’d mentioned cases where
someone had developed an inhibitor after infusing 120
times. Crying, I told them both that if I were capable
of so injuring my son — even unknowingly — that they
should relieve me of my parenting responsibilities. The
nurse stated this wasn’t so, revisited the study.
Given the Social worker’s actions and demeanor, I re-
searched the complaint process of the hospital and
expressed my concerns with the social worker. When
I received a response, I was directed to a specific per-
son who would address the issue. Unfortunately, I heard
no response from this individual, and tried to start the
complaint process anew. Receiving a call from the same
person who handled my first complaint, I notice that she
seemed colder. She was not personable and addressed
me by last name only — the total opposite was true of
the initial call back. She stated that she’d talked to the
social worker’s superior, who I learned was the nurse to
whom she’d lied about our conversation, the same nurse
who had secretly taken the inhibitor test. It became clear
to me: she lied to her boss because she had been, at the
very least, unethical (not to mention cruel).
continued on next page…
Fall 2014 | Dateline Federation 9
