This writing called the Preemie Syndrome was posted by Candi Montague-Sturgon in The Retinopathy of Prematurity Foundation (ROP) Yahoo Group.
Candi Montague-Sturgeon created the doc: “”Preemie Syndrome””. I copy her work to share as my beginning place for this blog because it states so eloquently the problems before micro-preemies, preemues and their parents. This was an interesting read for me, a lifelong educator, grandmother of a 2007 micropreemie and teacher to a 20 yr old 1991 micropreemie who is a modern-day pioneer in this lifelong struggle surviving micropreemies face.

“Why “Preemie Syndrome”? Over the past several decades, more and more children who were born extremely prematurely, have survived the Neonatal Intensive Care Unit (NICU). Some of these survived with “major” disabilities, such as blindness, cerebral palsy or moderate to severe mental retardation. Others, however, did not have these readily recognizable problems. They were often lost to follow-up cause preemie follow-up generally ends by age two if there are no major issues – and there were none.

However, once these children reach school age, the teachers and parents do notice problems. They may not be considered significant, but they do impact a child’s life in quite a significant way.

Some parents take their children to a child psychologist or psychiatrist or to their pediatrician, and may get diagnoses such as Autism or Pervasive Developmental Disorder (PDD), ADHD, Non-verbal Learning Disorder (NLD), or Sensory Integration Dysfunction (SID).

Still, these children often are “not quite typical” for the group of children with their label, or their issues are complicated by the fact that they often have more than one diagnosis. Others have no diagnosis at all, because the DSM-IV or the special education classification system used on them doesn’t have a category for their behavior or they may have features of certain disorders but don’t meet the criteria. Consequently, these children may not receive special educational services or support that they do need. Others get these services due to the presence of other (major or formally recognized) disabilities, but some of their problems may not be addressed cause, it’s assumed, if the child has only this or that disability, that’s what the educational or support plan should be designed for and otherwise he should be doing fine.

The word “preemie syndrome” was coined by members on the PREEMIE-CHILD mailing list, mostly parents of children born prematurely who are now four years old or older. The term is used to explain preemie children’s behavioual or developmental problems that may not be formally diagnosed or recognized.

What Is “Preemie Syndrome”? “Preemie Syndrome” is not a real syndrome so much, Like Down Syndrome or Fragile X Syndrome. Rather, it is a list of symptoms that are more common among children born prematurely than within the general population, and that may often be misunderstood by doctors, psychologists, educators and other professionals.

These symptoms include:
Motor deficits: often not diagnosed as cerebral palsy;
developmental coordination disorder; “clumsy child syndrome”;
fine and gross motor delays;
hypotonia or hypertonia Cognitive impairments: learning disabilities or low IQ; difficulty thinking logically or dealing with abstractions;
literal-mindedness;
inability to comprehend or follow simple directions;
sometimes good rote memory;
test scores may be higher than actual functioning;
short-term memory loss;
inconsistent performance;
Speech problems;
Feeding problems:
reflux;
failure to thrive;
Dental problems: missing teeth;
need for braces; high palate;
Blindness;
Retinopathy of Prematurity (ROP);
cortical visual impairment;
Autism;
Asperger’s Syndrome;
Pervasive Developmental Disorder; “autistic traits”;
Social dysfunction: few or no friends;
may not recognize social cues;
oblivious to social space;
low self-esteem;
Behavioral problems:
immaturity;
self-regulation problems;
poor impulse control;
intense need for order and routine; stereotypic (self-stimulatory) or self-injurious behaviours;
disorganized behavior;
inability to priorize;
Attention Deficit (Hyperactivity) Disorder (ADD/ADHD) or similar traits;
Sensory issues: sensory integration dysfunciton;
sensitivity to noise;
increased startle reaction;
“tactile defensiveness”;
strong aversion to certain tastes or textures;
Depression;
bi-polar disorder;
Anxiety disorders;
obsessive-compulsive disorder (OCD); peculiar phobias;
Reactive Attachment Disorder (RAD) or attachment issues;
Precocious puberty.

What Causes “Preemie Syndrome”? There is no specific cause for the problems preemies face. Actually, preemies are not the only children who experience these symptoms. They may also result from stroke or other brain injury.

In preemies, there is an increased risk if the child had intraventricular hemorrhage (IVH). However, even children with no neurological damage may display these symptoms. Trauma from their NICU experience is a possible cause.

What Are the Consequences of “Preemie Syndrome”? Preemies with hard to identify difficulties face problems at home and in school. Their behavior may not be understood and they are likely to receive no or inadequate services, because it is not easy to put these children into a diagnostic box. Service providers generally have a more or less standardized approach to helping children, and it is harder to serve a child if she doesn’t fit neatly into a category.

Furthermore, a combination of several disabilities may cause difficulty in getting adequate support, even if the disabilities have been identified. For example, until I was twenty I had unidentified social and behavioral problems in addition to blindness, which I wasn’t treated for because no-one knew what was wrong. Then, at age twenty, I was diagnosed with an autistic spectrum disorder, but it was still hard to find the right support, because one organization refused me because I was autistic and the other because I was blind. Consequently, for children – and adults – with “preemie syndrome”, it is hard to get the right services they need to live fulfilling lives.” Candi Montague-Sturgon

I, Sue Darnell Ellis, begin this blog as a concerned grandmother. I am concerned that my micro-preemie grandson gets a complete and full education due him, just as other children, without his obvious stubbling blocks, receive

I begin this blog as a lifelong educator concerned that our nation, states, districts, schools and educators are not prepared for the increasing numbers of NICU survivors who will be coming into the schools with the host of issues listed above.

I begin this blog to begin an awakening. These miracle-baby, micro-preemie survivors have faced unbeatable odds and beaten them. They are stronger fighters than most of us could ever be for they, in their young lives, have fought through painful experiences unlike few of us have ever known.

It has been said it takes a village to raise a child. Please join me in this journey to help all of our villages and schools be ready to work outside the old standard educational boxes and give these micro-preemies an opportunity to learn with a truly individualized education plan. Let us all love, support and encourage these children with high expectations, rigorous plans that will lead them into the productive and fulfilling lives they deserve.