Below is a story from a mom who has experienced a
nightmare when it came to her daughter’s medical condition and her subsequent
surgeries. This is a horror that no parent should have to endure.
I urge you to watch Hailey’s video, read the
explanation below and decide for yourselves.
It is a lesson for all parents to learn.
Here is
the link to the video: Hailey’s Cranio Journey
Hi
Julie,
Hailey was diagnosed
with Craniosynostosis at 4 months of age. Craniosynostosis is where the sutures
in a baby's head will prematurely fuse not allowing for the brain to have
proper brain growth.
When a suture fuses,
surgery is required to fix the suture that is closed to reopen it. The child's
skull bone is removed and taken to another table to fix and then is re-inserted
into the head. If the surgery is not performed the chances of that the child
developing seizures, blindness, chiari (the brain will start to push through
the spinal tap), mental defects are very high depending on the severity.
BMP-2 is an implant that
is used to help create bone. In some cases, there is not enough bone to be able
to reshape the infants/child head, this is where they remove bone from another
part of the body to place in these areas or use other known materials that
work.
At the present time it
is only FDA approved for re-peat adult spinal lumbar surgeries but has had a
ton of bad publicity in the past year. The US Justice Department has fined the
pharmaceutical company for its "off-Label" usage, which was an
extreme off-label usage in Hailey's experiment as is not to be used on an
immature skeleton.
The Senate was
investigating them last year as well for its off-label usage. The FDA has also
requested information as they have claimed that during trial experiments, the
doctors that sent the trial experiment information to them was misleading as
these doctors were paid thousand/millions of doctors in royalties for their experiments
on the BMP-2 and they approved the BMP-2 in adult surgeries from these trial
experiments. It is now today being said that BMP-2 is considered a
carcinagentic (cancerous).
As a baby’s head growth
and brain growth during the first year of life is very important. No one can
tell us what will be her outcome as the BMP-2 was so thick with fake bone in
areas that it was said that she would have never of expanded on her own as the
bone was so thick that her brain at the time of the second surgery was trying
to push but that it had been rubbing her bone, this is the Inter Cranial
Pressure that I speak of.
During this time the
brain tries to grow, the sutures are very important as the brain growth expands
at a very fast rate thus allowing the open sutures to move and allow for this
growth spurt.
The second surgery is
thought to be a success but there is no guarantee and they have told us this.
Currently though, Hailey has been having a golf size bump protruding from her
forehead region that is not normal. We are currently waiting it out to see what
happens and continuing to monitor her for Inter Cranial pressure while this
bump is not normal we are unsure of what will happen next. Her Plastic surgeon
just requested again that we travel out to see him soon; we were just in NY in
July for a follow up due to this bump on her forehead now.
Lingering issues, she
continues to have absence seizures, central apnea (brain telling the body to
breath) no reflexes and we are trying to uncover what else. We just added a new
Neurologist to her team in NY ….. She may need another cranio surgery, so at
this time we are waiting to see what happens. Her jaw will need to be broken
and reset when she turns five. She doesn't have enough room in her mouth for
any more teeth and due to the cranio coronal sutures fusing it did not allow
for proper facial growth. Her eyes have hypotolarism (spaced to close together)
but that's the least of our concerns right now in her medical issues.
It's a VERY long story,
hopefully I made this helpful?
Thank you!!!!!!! for all
your help!!!
Tricia
Note: Please keep in mind, I am only passing
this information on as a support to this mother and her family to help educate
the rest of us parents. We must scrutinize every medical procedure, ask lots of
questions and understand everything being done when it comes to the medical
care for our children. Then we must never stop searching for answers when we know in our hearts something is wrong.
My own son would have died as a newborn if I didn't insist that the pediatrician on call was wrong when she said nothing was wrong with him. I pushed and luckily found one nurse who insisted on further investigation, if nothing else to just to appease a worried new mom.
To all their surprise, I was right. They then rushed him to the NICU (Newborn Intensive Care Unit) He received the care he needed, albeit later than he should have, but thankfully it all turned out alright. I shudder to think about what might have happened if I had let the hospital staff convince me that there was nothing wrong. I listened to my mother's instinct and insisted they keep searching. Their tests were initially done I believe to shut me up, but it turned out to confirm my fears.
Always listen to that mother's instinct.
Most medical professionals only have our
children’s best interests at heart and would never intentionally do anything to
cause harm, but just like in all professions, there may be exceptions.
In all fairness, I did not contact any of the medical
professionals connected to this case because of the medical confidentiality
involved. I am not related to Hailey or her family and therefore am not entitled
to discuss her case. These restrictions prevent me from hearing the other side of the story and being able to present it here.
I assume no responsibility for this case and am
merely passing along one mother’s story.
That being said, as a mom, you can probably
guess who my thoughts go to.
Here is
the link to the video: Hailey’s Cranio Journey
Julie
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