It has come to my attention that Robert (R) and this website have become topics of discussion on a closed Reddit group. Since it is a closed group, I will respond to the concerns expressed within the group here. This is an area of serious discourse and parents should have all available information when making decisions. Some of the concerns on Reddit are expressed by multiple posters so I will combine/paraphrase where I can. For all of these issues there are peer reviewed studies and other information already posted on this website.
What is missing from the Reddit posts I was sent are peer reviewed studies, case studies or credentials for the Reddit posters to support their opinions.
“There is a network of quack doctors, chiropractors, and naturopaths . . .” “The pipeline usually starts with Dr. Paul Harch.”
I am a former police diver and have done some commercial dive work. Twenty years ago, I was left paralyzed following a black water dive and it took months for me to regain my ability to walk, void on my own, etc. It was this injury that caused me to initially study HBOT. In looking at the dive related aspects of hyperbaric medicine I also discovered the hanging data (HIE), dead baby studies (HIE) and other work from the US and Europe. When Robert drowned (HIE) we immediately began asking for HBOT intervention. (This request for HBOT was based on personal knowledge, not Dr. Google.) We were refused HBOT for a host of reasons, including cost. Even after the hospital admitted that their drowning outcomes were poor, we were refused HBOT. Even after the hospital recommended that we medicate Robert and let him pass, we were refused HBOT. The pictures of Robert on discharge from the hospital and after his second dive are posted here. The difference in time between these pictures was five days and the only change was dropping all meds by 10% and completing two (2) HBOT dives. You be the jury. HBOT for HIE shows improvement in 80% of documented cases and has a very low risk profile. (The 80% figure comes from unpublished data that is currently being collated and prepared for peer review.) To call Dr. Harch a quack is to resort to character attack when no other argument can be made. Dr. Harch’s bill for 40 dives (2 months of treatment) was less than one day in the PICU and we saw profound results with HBOT.
All of Robert’s care following discharge from the hospital has been self pay. If we don’t see results with a therapy we stop it. That some of the most effective therapists have come from non-traditional backgrounds doesn’t negate the results.
“ER and ICU doctors are part of a conspiracy to take brain injury patients off life support in order to harvest their organs”
A quick medical clarification, organs can’t be harvested once a child is taken off of required life support. Organs can only be harvested from a biologically alive patient. Robert was off the vent and his heart was beating entirely on its own the last time the hospital suggested we abandon his care and donate his organs.
It was made clear to us immediately following Robert’s admission to the hospital that brain swelling would peak approximately 72 hours after drowning and that in the meantime we just had to ‘wait and see’. I have a high school friend who was birth injured and was put on some heavy hitting anti-inflammatory medications to protect her brain during this critical period. I have a family friend that was involved in a helicopter crash. He was placed on the exact same medications to protect his brain from the swelling. Nothing was done for Robert to prevent or minimize swelling. No medications. No chilling. No CBD which, combined with chilling, is gaining traction as a brain injury protocol in Europe. When I expressed frustration about this to an ER nurse that I know well; he said that Robert probably didn’t survive the intake matrix. I don’t assert a ‘conspiracy’. I do assert that there is a triage matrix and that the hospital decides quickly which kids are viewed as a waste of resources. Robert was apparently one of those kids. The existence of a triage matrix, or similar, has been confirmed by multiple M.D.’s and Anesthesiologists that I know personally.
Robert was, in fact, warmed following admission to the PICU. When we encouraged another parent with a drowned child to seek protective cooling she called back and said the hospital refused. The hospital stated they had to warm the child, “to protect the organs.”
I have had three sets of parents in the same hospital each tell me, “They say our child is the worst they have ever seen.” At what point does this cease to be a diagnosis and simply become a script?
If we had listened to the credentialed experts Robert would be long dead based on a decision made a few days after his injury and before anybody had any real insight into his condition.
Allopathic Drugs
As indicated above, Robert was denied allopathic anti-inflammatory drugs when they might have benefited him the most. That none of the normal suite of drugs used to treat storming and tone have been tested on pediatric patients is not up for debate. That most have not been approved for brain injury and are being used off label is not up for debate. That almost all are cerebral disruptors is not up for debate. The drugs treat symptoms. HBOT treats the injury.
HBOT Studies
The VA studies are referenced. The Canadian CP studies were thrown at us in the PICU. These are flawed studies without proper controls and, in the case of the CP studies, dangerous treatment protocols. I have addressed the CP studies on this website and they are further addressed in The Textbook of Hyperbaric Medicine.
