No two children with Heterotaxy, Autism, PDD NOS or Aspergers are alike; this statement is true in the sense that the Characteristics are different.
Children with Heterotaxy have various abnormal placements of the organs and complex vascular malformation. This is due in part from the failure to begin the normal left – right configuration during the embryonic stage of life. From what I read on the internet, the Nodal Cilia is what moves the organ in its correct place from left to right, and it aids in the development of the organs. According to the NIH, they believe that certain forms of CHD or heterotaxy may have the same genetic origin as Primary ciliary dyskinesia (PCD).
So, what are the different characteristics a child with Heterotaxy may have? A child with Heterotaxy may have mild to severe CHD, Polysplenia Syndrome, Functional Asplenia or Asplenia syndrome. Heterotaxy also has a very high mortality rate because of Congenital Heart Disease (CHD). Please see the links noted below for more information on various diseases associated with Asplenia Syndrome or Polysplenia Syndrome.
Children who have Autism, Asperger’s Syndrome, or PDD NOS have different characteristics in communication; social interactions, intelligence, and behavior. Like Heterotaxy, this is a complex disorder. However, Autism or Aspergers is a neurobiological disorder that a person may have throughout their life. Autism, Asperger’s Syndrome, and PDD NOS are a part of the group of disorders known as Pervasive Developmental Disorders (PDD). They are five disorders that fall into the category of PDD. The other two disorders are Rett Syndrome and Childhood Disintegrative.
I honestly do not know much about PDD but I have been trying to do some reading on my own. I have also contacted the DMR (Department of Mental Retardation) and Community Autism Resources in my state. I have an intake appointment set up at the end of this month with DMR. I also received three large folders from our local Community Autism Resources center. Overall, I am very impressed with the state that I live in. As of yet, I really have no complaints. Brady has Early Intervention, ABA services and an IEP meeting; all scheduled in May. Brady will also begin pre-school after his third birthday, and he will be going into our city’s school system.
What a difference between the two disabilities my children have. For example, I was so lost last year when Chloe received the diagnosis of Heterotaxy, Polysplenia. I had nowhere to turn to for help or for information; I had to search for information on my own. I did find a great support group for which parents come together for the same purpose; to find other children similar to their own. I am also now part of a foundation, which is still in the beginning stages. On the other hand, when Brady received the diagnosis, I received pamphlets on PDD NOS and direction on what type of services he should received. It was amazing to me on how many services are out there for a child with any form of PDD. All I had to do was make a few phone calls and within a week he was already set up for ABA. My hope is that someday children with Heterotaxy will have the same amount of resources as children with any form of PDD.
I am a firm believer that it all starts with one person to spread awareness and make a difference!!! And it begins with a parent reaching out to other parents. Today is Autism Awareness day so let’s take a moment to think and reflect on what it means to have a child with any type of disability, disorder or syndrome.
http://hmg.oxfordjournals.org/cgi/content/abstract/18/5/861
http://circ.ahajournals.org/cgi/content/full/115/22/2814
http://clinicaltrials.gov/ct2/show/NCT00608556
http://emedicine.medscape.com/article/896865-overview
http://emedicine.medscape.com/article/896757-overview
http://en.wikipedia.org/wiki/Pervasive_developmental_disorder
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