Helen Harrison has compiled a list of "preemie syndrome symptoms". She entered this in the comments section of one of my posts but I feel that this list is important and wanted to devote a post to this list of issues that preemies face.
Let me make something very clear. Helen is just reporting on what other preemie parents have listed as "issues". These issues ARE real. Over the years I have been in contact with hundreds (not just 15-some of you will understand this humor) of preemies who have these "issues".
Those of you who are new parents are were told of these potential issues... you are lucky and should be thanking those that have come before you and fought to be heard. When our daughter was very young, we had many pediatricians and specialists tell hubby and I that our daughter was the only one who was experiencing some issues. Then I started talking to other preemie parents. Imagine the joy/horror we felt to know we were not alone. We started speaking up, fighting to be heard, so other parents would not ever experience what we went through.
The list is not complete. If you have more issues you are wondering about.. please feel free to ask.
Helen Harrison said...
Here are the preemie syndrome symptoms I used in a 2005 presentation to the National Perinatal Association.These are the traits that don't show up in premature follow-up studies, but alone or in combination, and they usually exist in combination, these traits may prevent future independent living.
Social Dysfunction: few, or no friends; oblivious to social cues; oblivious to social space; low self-esteem
Behavioral Problems: general immaturities; poor impulse control; stereotypic or self-injurious behaviors; intense need for order and routine; sleep disorders
Extreme Sensitivities: strong startle reactions; hypersensitivity to sound; extreme aversions to certain tastes and textures; "tactile defensiveness"
Cognitive Problems: difficulty thinking logically or to dealing with abstraction; literal-mindedness; May be good at rote learning; test scores may be higher than actual functioning;
Also "savant" traits that co-exist with low IQ; inability to comprehend or follow simple directions; generally disorganized
Abnormal Reactions to Pain and Danger: may not respond to pain of illness or injury, but may also still have a deep fear of medical procedures; may fail to recognize (or actually seek out) life-threatening experiences; peculiar phobias
I only included behavioral/cognitive issues above. Many will recognize them as compatible with autism disorders. Elsewhere I have also mentioned the physical and medical problems that continue to afflict our children:
significant motor problems not diagnosed as cerebral palsy
intractable feeding disorders; failure to thrive
digestive problems, such as severe reflux, intractable constipation, bowel adhesions from NICU surgery,gall bladder disease, need for g-tube feeding arising in late infancy or beyond
ongoing lung problems; severe asthma
visual problems from ROP that deteriorate leading to later blindness
metabolic syndrome (high blood pressure, diabetes, high BMI)unusually copious sweating (metabolic? neurologic?)
Delusional thinking; schizophrenia
Perseveration Seizure disorders arising in adolescence or early adulthood
dental issues (yellow adult teeth, high pallate, missing teeth)
vocal cord paralysis