Announcing "Extreme Preemie Syndrome"

I feel REALLY strongly about this.

There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!

Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.

My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.

Maybe I've been looking for something that doesn't exist.

This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.

I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.

Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."

This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.

Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.

There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.

I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.

So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.

There needs to be a newly formed label called: "Extreme Preemie Syndrome".

Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.

I heard a mom once say to me, trying to explain their child:

"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."

Here are some posts from my Micro Preemie Support group that got me thinking:

Stacy:

"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.

P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.

As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.

Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.

I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.

Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"

And from Anne:

"I completely agree Stacey that there should be something called Preemie Syndrome.

When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.

He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.

This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.

Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."

We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."

Thank you Stacey and Anne. You make me happy to have you as friends!

Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!

And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.