Magazine article The Exceptional Parent

My Daughter Elisa: How Hyperbaric Oxygen Therapy Helped Change My Daughter's Life

Magazine article The Exceptional Parent

My Daughter Elisa: How Hyperbaric Oxygen Therapy Helped Change My Daughter's Life

Article excerpt

My name is Giussippina Benincasa-Feingold and I am a pediatrician and a mother of five children. In 1996, I gave birth to my second child, Elisa. She was a low birth weight preemie but she was also one of the most beautiful babies I had ever seen. Little did I realize that my life would change forever with one phone call from her neonatologist. The neonatologist informed me that Elisa had PVL or periventricular leukomalacia. This is a condition in which the white matter surrounding the ventricles in her brain had suffered damage during the birthing process. I knew the jargon and I knew what the words meant. But at that point, everything became a blur. I have vague memories of what happened next but I know that, I cried a great deal. I prayed. I called every doctor I knew for reassurance, every rabbi, priest, healer to plead with God on my behalf.

Elisa was diagnosed with cerebral palsy (CP) about six months after the diagnosis of PVL. We did everything as soon as we found out. We did physical therapy five days a week and occupational therapy five days a week. The improvements were small and I was getting more desperate. I was told that if she sat unsupported by the age of three, then she would probably at some point walk. I increased her therapy to get to that point. A distant relative told my mother of hyperbaric oxygen therapy (HBOT). I am a pediatrician who worked in a pediatric emergency room. I knew about HBOT for carbon monoxide poisoning, for wounds and severe burns etc. But as a physician, I thought the very idea of using it for CP was absurd. I continued with increased OT, PT and SLP Therapy with the same minimal results.

My mother would constantly badger me to try HBOT, and I finally gave in, December of 1999. Elisa was then three-and-a-half years old, she could not sit unsupported, said maybe 30 words comprehensible to only me, my mother and her father. She could commando-crawl, not bear weight and screamed hysterically when she needed anything.

During first two weeks of HBOT, things started to change. Elisa seemed to be more aware of things. We had lived in the house we were in since she was born but she was looking at it as if it was the first time she had seen it. Then something else happened. She began to make sounds, an initial effort at speech. Not all at once but she would mumble sounds for hours then add to them and suddenly she began to form words. At this point I was so convinced that I did 120 HBOT treatments between December of 1999 and June 2000. During that summer she had developed more than 1000 words and was actually making three-word sentences. She became completely toilet trained and, for the very first time since she was born, I felt that I had a daughter!

As a doctor and a mother, I was greatly criticized by my colleagues. I heard it all: HBOT is snake oil; a therapy looking for a disease. There are no randomized, doubled blinded, placebo controlled clinical trials to establish efficacy and safety; nothing which the scientific medical community could accept as worthy of acknowledging it as a therapy. I was reminded, time after time, that physicians are scientists! (My personal favorite). But the fact is that Medicine is not an exact science. Physicians do not do everything in accordance with double-blind studies. Medicine is both an art and a science. We look at things that are proven but then we also take some calculated risks. As an example, I have never once seen a randomized, double-blind placebo controlled study to demonstrate scientifically that physical therapy works. Yet, physical therapy has been used for centuries with extremely positive results. We used aspirin for decades without knowing the mechanism of action and stopped using it without really knowing if it had a cause and effect with a serious illness. Even vaccines administered the way we have been giving four in one day has not been proven effective--and yet we do it.

My response to my colleagues was always the same: I don't have 15 years until we can assemble the millions of dollars and the organizational and research manpower to do a double-blind study. …

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