From the Bubble Boy of the 70s to 2010's Extraordinary Measures, popular media has captured thereal life stories of families willing to go to extreme measures and participate in controversial, or experimental research in search of answers to their children's health issues.
While perhaps not as extreme as those family challenges portrayed on film, everyday families are put into positions to make similar decision regarding participation in research with their children.
I can think of several examples involving families I have worked with in my career.
One infant that I worked with in the Early Intervention system was the second NICU resident at the local cildren's hospital to utilize Extracorporeal membrane oxygenation(ECMO). The hospital was participating in clinical trials of the use of ECMO in micropremies. The idea behind ECMO in premeies and micropremies is that the artificial filtering and oxygeniation of the blood reduces the stress on the heart and respiratory system allowing those body systems to continue to mature. The risk is that there is increased risk of infection as well as ischemic brain injury (cell loss due to decreased oxygen levels) and the risk of rupturing blood vessels as the vessels in premies are very small and the catheters for the procedure are generally larger than the vessels.
I had the privelage of being one of the therapists to work with the first set of surviving sextuplets in the US, who happened to be born in my state. This family opted to pioneer the treatment protocols for large order multiple pregnancies and elect to not utilize selective reduction as recommended by their medical team. The entire pregnancy and birth process was new and unknown for their doctors. The family also had to make the difficult decision if they wanted to use botox injections for one of the children to relieve the muscle contractures related to cerebral palsy.
Working with deaf and hearing impaired infants and toddlers several of the fammilies I worked with were presented the option to utilize cochlear implants or to go with a total communication approach using sign language and speech therapy. Prior to 1990, Cochlear Impants were approved in the US for use in adults only but some parents were electing to use the product off label. Because of the documented success the FDA lowered the approved age for use to 12 months in 2000. The device continues to be controversial and is still used off label by families and physicians in extreme cases as young as 3 or 4 months of age.
Lora,
ReplyDeleteYikes! The research of Extracorporeal membrane oxygenation(ECMO) sounds scary and risky. I was a born 3 months early and had 100% oxygen for almost a week and was in an incubator for 2 months. I went home the month I was actually scheduled to be born. I apparently participated in a research study of giving physical contact affection attention to premies to see if giving them more affection gave them a higher survival rate. (i literally just found this out right now)
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ReplyDeleteLora, cochlear implant technology needs more research to help adults and children who have this problem to improve the quality of their lives.
ReplyDeleteCochlear implant helps children with hearing difficulties to stimulate their auditory nerve and helps them with the sounds of words, which helps an individual to understand speech better.
More than 59,000 people world wide, adults and children have cochlear implants. Earlier scientist did not think that such technology as cochlear implant could work. Many studies and stories today are proving them wrong.
Absolutely Cochlear implants, like many interventions, continues to need more research. I have a degree in American Sign Language and prior to sustaining a career ending injury was a RID certified interpreter. I continue to work within Deaf culture as an early intervention provider for the infant0toddler outreach project for my state's school for the d/Deaf.
ReplyDeleteFor adults who have lost their hearing later in life and are enculturated into hearing society, the loss of hearing is a devastating issue. However for children of Deaf adults, being deaf and using sign language is part of the culture they are raised in. Those who identify with the Deaf culture do not see their lack of hearing as a problem that impacts their quality of life.
I believe that cochlear implants are a good option, and can be very successful. I do not believe it is the best choice for every individual. I know of several children and adults who now have issues with seizures and migraine headaches from the electrode placements of their cochlears. One must also keep in mind that with a cochlear in place, the individual cannot play contact sports. One student I used to interpret for was very athletically talented but was limited for his sports choices because of his implant.
There may be thousands of successful implants worldwide, but there are also thousands of individuals who live within the Deaf culture without implants who are equally successful.