One Mom's Story of Her Son's Progress
with HBO Therapy
Dear Dr. O,
You Wrote:
CP is a static disease of the brain. However, it is not a fatal
disease. The disease itself does not get worse. The brain continues
to develop after birth, just as it does in unaffected children. And
the brain matures, the child gains skills and coordination. When an
intervention is employed, and the patient changes, the natural
inclination is to ascribe the change to the intervention, when in
fact it may simply be part of the natural history.
When you try to explain this to real patients and their parents, you are often accused of engaging in some kind of medical conspiracy, or of being uncompassionate and taking away one's "hope." Even rudimentary proof requires more than simple observation in order to gain acceptance. It requires testing.
my reply:
I am just a parent. I do not feel that there is a medical conspiracy.
I know many compassionate doctors who believe my son will progress.
Some of these wonderful practitioners checked into HBOT for me. They
refused to write prescriptions for this therapy. They said they felt
that HBO proponents were using special needs parent's hope to get
money from them.
I am an ICU RN . I did private duty on my own multi-handicapped, medically and surgically traumatized infant and child. (CDH, S/P ECMO via rt. carotid with multiple nosocomial and iatrogenic complications. ) I did not rush blindly into anything. But while I am waiting for PROOF that HBO works, my child is getting older and falling further behind. I watched him take 4 steps forward and 3 steps back and plateau for most of his life. After HBOT, I saw him take 4 steps forward and only 1 step back.
If there was no change in the pattern for 9 years and then a drastic change in the pattern, one would suspect that something occurred to change the pattern. Maybe it was just a really good summer vacation sitting in a tank watching movies - or - maybe it was the oxygen being pushed into areas of his brain that needed it. Maybe he grew some new capillaries to feed the cells.
I can't wait for approval for something that might help. If I can help him not to keep sliding further and further behind, I have to do that. I'm sorry anecdotal reports are not standardized enough for you. Most multiply challenged children I see, need adapted tests anyway to see the real picture of who they are and what they can do. I have feedback from many people who don't even know we went to hyperbarics, who see real improvement.
CP may not be a fatal disease to you. But many of the complications people get, predispose them to other problems. An insurance adjuster told me my son probably would not live past 30. We will prove him wrong as we have proven so many doctors wrong:
"You should consider terminating your pregnancy, 50-90 % of those born with a CDH die." - true, but not my choice.
And in the NICU patient care conference, "His mom is a nurse, she must realize he is going to die" - wrong.
During his 4 month stay in NICU, when I told them I was going back to work so I could take maternity leave when he came home: "But you will feel so guilty when he dies" - wrong.
"He probably will not walk or be able to use his hands." - wrong.
"If you take him off his seizure meds, he will have massive seizures." - wrong.
"He will need to have his trach till he is 6 or 7." - wrong (from 1yr- 2yrs old).
"He has CP and had a massive stroke going off ECMO, but PT and OT will not help him." - wrong.
"He doesn't need speech, he will never talk." -we are still working on this, but - wrong.
"You can't use HBOT to help decrease learning disabilities, improve his auditory processing, help him attend better, and improve his language." -WRONG
Deb Hall, mom
Fall 1999
