Whatever it takes

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.

Research Simulation Topic

The broad area I selected for research was infant-toddler mental health.  I have completed the four modules of PITC (http://www.pitc.org/) and while infant-toddler mental health was included in these modules, it was in an overview manner.  Because the development that occurs in the infant-toddler years is the basis for all other development it is an especially critical time.  I have worked in the infant-toddler field as an eligiblity/intake specialist for the Early Intervention program in my state and as a program coordinator for Early Head Start.  Again while I touched on the area of mental health in this age group, it was on the surface. 
The subarea that I have elected to focus on combines my current employment as a behavior therapist.  I think that looking into the possible connection between language delays in the infant-toddler years and social emotional development will be personally and professionally fulfilling. 
Language development is known to impact all other developmental domains and since social emotional expression is reliant on communication it would seem common sense that there would be a connection and understanding this connection can provide guidance to parents, child care providers and teachers as they work with at-risk and children with identified delays.  The understanding of this early age connection can also supports those who work with older children and adults that are developmentally at an early stage with social-emotional development progress and continue to develop pro-social skills.