Sunday, January 28, 2007

"Well, she looks good to me"

I find this to be one of the most dismissive statements one can say to a preemie parent. At a time when you should be happy that your baby/child "looks good", having a preemie doesn't afford you this joy.

Many people have said this to us over the years. It makes me want to scream. It completely negates everything we are dealing with at the time!

Yes, she looks good but do you realize that I just spent an hour trying to give her a bath. She has sensory issues and the water causes her pain.

Yes, she looks good but do you realize that she is an ounce away from a feeding tube.

Yes, she looks good but do you realize that she has pain every day.

Yes, she looks good but do you realize that her seizures have caused others around her to be afraid of her.

Yes, she looks good but do you realize that she has such horrible anger outbursts that we have to watch her so she does not hurt herself.

Yes, she looks good but do you realize that she doesn't have any friends because they all think she is weird.

Yes, she looks good but do you realize that the only reason she has gained weight is because we have worked so hard with her.

The Internet is not large enough for me to continue.

The most frustrating of all is when doctors have said it to us. As if "looking good" means that nothing can be wrong with you!!!

When our daughter was 4 years old she started having very bad pain in her legs. She was so fatigued that she could no longer walk around the block. During an appointment with her neurologist he asked her how she was doing, while she was hoping up on to the table. She told him, "my legs hurt." to which he replied (while patting her on the head), "no they don't." She told him again, "they really hurt." and he told her "they must not hurt that bad-you didn't have a problem hoping on to the table." He turned to me and I went on to explain that she really was in pain. Her legs were so tight that, when sitting with her legs straight, her toes touched the floor. It was hard to look at. He looked at her, looked at me and said, "she looks good to me." I stood up, picked up my daughter and said, "you are failing my daughter with you attitude!" and I walked out.

Another doctor told us that she looked too beautiful to have any of the problems we were describing (all OCD related).

Yet another one told us that we were lucky that she was born premature because she was so petite and pretty.

A geneticist once told us (while being evaluated for a mitochondrial disorder) that she was too smart and pretty to have mito. He finished up the appointment by saying, "she looks good to me."

ARGH!!!!!!!!!!!!!!!

13 comments:

delightful-d said...

I know exactly what you are saying when you hear people tell you "she looks good to me". I have people tell me that all the time with my son. "Well, look at him, he's healthy (so they think), he's adjusting well (they don't live with him), he's this, he's that". Drives me crazy because like I said before, they don't live with him. They don't have to deal with the day to day and they don't see everything that goes on. Sure he adjusts to certain situations but there have been times at home that our son just has to let it all out. He can't pretend anymore! I'd love talk more about this.
I'm enclosing my email and my blog page. Thank you!
Minnesota Mom
http://lifeweebell.blogspot.com
dianneklein@earthlink.net

Helen Harrison said...

On the NAROF (Yahoo) group, I have put up a series of pictures of Edward entitled "The Evolution of NICU Disability." It follows him from the NICU, through very cute childhood, into adulthood.
http://groups.yahoo.com/group/narof/messages?o=1

We, too, used to hear "he looks so good!" At least we heard that after his eyes were straightened out at age 1.

But at this point in his life, Ed looks and walks in such a way that most people catch on immediately that something is wrong with him.

But, sometimes, at first glance... for example, when we're out and I have to bring him into the "ladies room," the other women gasp in horror. When I tell them, "Don't worry, he's blind and retarded." They gasp again.

Helen Harrison said...

Also over on the NAROF picture gallery is the absolutely darling preemie son of one of our members.

He is wearing a t-shirt that says:
"I'm not naughty, I'm autistic."

The invisible handicaps are often the most difficult.

The Preemie Experiment said...

Helen wrote: "The invisible handicaps are often the most difficult"

Oh so true Helen! It's actually my next post... coming soon.

Chris and Vic said...

"She looks good" can only be said by someone who hasn't looked closely.
S/he looks good on the surface, for the moment, in a snapshot. But then, as you say, there are the invisible disabilities. You only see these if you take a little more time, perhaps walking a mile in our shoes--which is what all neos and future pediatricians should do as a part of their training. You only see clearly if you make no assumptions; if you refuse to believe that a snapshot or a moment in time tells very much of any person's story.

Look deeply. Listen quietly. Put yourself in the mother's or father's or sibling's place. Take some time before you decide what it is you are seeing and hearing, what the mothers on this blog are saying.

For many years, up till very recent history, people with disabilties were hidden away. You are hearing and seeing ex-preemies with disabilties and their parents "coming out of the closet". In other times in history, when we were in-hiding, it was as if insult (isolation) was added to injury (disability). No more. Everyone needs to take a good look and a good listen---embarrassed or disturbed by the ex-preemies stories and faces or not. Just look them in the eye: Ed, this bloggers daughter, my son, Vic, Teri's daughter with CP, Joan's son, etc.
Just pay attention, without being defensive, to them.

Why? Because we are all brothers and sisters, and we are all involved with one another. And it is a good thing . . .
Chris and Vic (CAK)

Anonymous said...

My son is only 2 already if I never hear this phrase again it will be too soon. When i hear that I want to say really? Wow. I guess I must see a different child. See the one i live with is not doing good. He is 2 and has no words, no sounds and no way to communicate. He cognitively is in the 9-10 month range. His gross motor skills are great but he does not understand/comprehend what his actions are. He cannot or will not eat. He is gtube fed. When he does take things by mouth he allows them to get all the way to his vocal cords before he swallows. He has frequent pnuemonias. He is so aggressive I worry that he is really going to hurt another child. 3 daycares have asked us to leave due to his biting and aggressive actions. I guess if you say he doesnt then it messes up the miracle 25 weeker image.

Really he looks good huh?

Helen Harrison said...

To Anonymous and others:

I'd be interested in finding out from you and others on the blog more about aggressive and violent tendencies that your children may have.

The stereotype of the preemie is that of a gentle passive sort of kid who rarely is involved in bad or criminal or destructive behavior.

I personally think the "rarely involved in criminal behavior" is because preemies don't get out much without close supervision, and they (at least in the case of my own son) are usually not able to plan well enough to effectively implement any impulses toward violence.

I say "usually," because our son, Edward, when is around little kids who are making the shrill noises little kids tend to make goes berserk. He will push the "offending" child down steps, off slides, and once, he tried to push a child out of a gondola going up to the top of Squaw Valley.

We are *very* careful with him now in situations involving children!

At any rate, I was wondering if our children's sometimes violent behavior seems planned to you or a reaction to overwhelming sensory stimulation (as with whining or shouting children) or something else.

Do you see actual malevolence here, or just random lashing out at a confusing world?

Helen Harrison said...

Dear Group,

Just read a really interesting study by Terrie Inder's group -- the ones doing MRI studies on preemies. This one is: Thompson DK et al. "Perinatal risk factors altering regional brain structure in the preterm infant _Brain_ (my copy is from Brain Advance Access published Sept. 28, 2006).

It looks like they are doing some major detective work on the preemie syndrome!
Here is an excerpt:

"[Our study identified] a new finding of a cerebral region of major apparent vulnerability which has not been reported previously to be altered in the preterm infant...that of the orbitofrontal region.

We documented an approximate reduction in the volume of this region by one-third...This region is known to be sensitive to stress and mediates emotional responses. Patients with lesions within this region may display irritability, social inappropriateness, poor judgement, lack of persistence, poor frustration tolerance and inflexibility, behaviors which are commonly displayed by infants born prematurely.

The orbitofrontal region also receives information from the object-processing visual stream, taste, olfactory and somatosensory inputs, as well as from the amygdyla, and thus impairment in cerebral development in this region may contribute to the delayed sensory integration of preterm infants.

The factors mediating disturbance in development in this cerebral region were not readily apparent in our analysis, with no clear association with any conventional perinatal factors ...This suggests that there may be important mediators of cerebral development which are not currently recognized but which may include environmental stress and/or drug exposures. In further support of the regional cerebral development in the preterm infant, interventions aimed at reducing stress have been shown to improve frontal region cerebral [white matter] development." [see Heidi Als' study in 2004 _Pediatrics_113:846-57]

Helen

Helen Harrison said...

To all:

Email me at Helen1144@aol.com and I will get the study (above) to any of you who want it.

I'll also try to get a bibliography together in the next few days on other MRI/preemie articles.

This is news you can use with your child's school, and with the ever-helpful friends and relatives who think it's all because you are a "bad mother."

Wendy said...

I am known as the "overprotective Mother". Sierra "looks good" to everyone, and considering other alternatives, she is. But she doesn't have the self control or forsight to keep her out of dangerous situations. I had a relative say to me: "Oh Wendy, she has to hurt herself sometimes...that's how she'll learn." Needless to say, I went off on her. I had to explain Sensory Integration Disorder, and the fact that Sierra will repeatedly do something (ie jump off a large rock or crash into something) if it fulfills a need even if she sustains injury from it. People look at me like I'm a control freak because I insist on holding Sierra's hand if we're near a street. They don't know that in a flash she might just decide to dart into the road.

The Preemie Experiment said...

Oh boy can I ever relate Wendy!

One day my daughter and I were outside with a friend and her 2 daughters. My daughter fell off of her scooter (she was 5 at the time)but proceeded to get right back on the scooter. I immediately called her over. While I was waiting for her to listen to me (she is a stubborn bugger) my friend told me that I was being overprotective and attempted to tell me that my daughter was obviously fine because she got right back on her scooter. As my daughter approached my friend was horrified to see my daughter bloody from the knee down. This was when I turned to her and reminded her that she had sensory issues and could not feel pain like the rest of us which is why it was always important for me to check and make sure she wasn't hurt. I spent the next hour picking gravel out of my daughters gash, with my friend apologizing the entire time.

Oh and then there was the time (last year) that I picked up my daughter after school and took her to the store. She went on and on about her day and what child got in trouble and who said nasty things about another child in class. She told me all about what she ate for lunch and what books she read that day. All in one breath she then said, "oh by the way I was walking back to my desk after I sharpened my pencil and someone bumped into me and my pencil went in my eye. Then we went out for recess and had a cookie for a snack. Vanessa was teasing me about my red eye and my pencil lead is missing so I had to borrow someones pencil..." I grabbed her face and turned her head towards me. She had a huge red spot on her eye. I rushed her to the doctors office where the receptionist told me (without looking at her) that they couldn't get her in today because they were too busy and that there is no way that my daughter did any damage to her eye because she would have been crying. I held my daugther up to the receptionist who then immediately got a doctor. Sure enough, she tore the white of her eye, from the colored part all the way to the corner. We never found the lead.

Helen Harrison said...

RE: pain and fear

When I was a parent consultant for the PORT Project (a multi-national VLBW school-age outcomes study), I brought to our 1998 meeting in Amsterdam a list of quotes from preemie-list and preemie-child (with parents' permission) from the previous month. Here are a few on the pain/fear issue, the first quote is from one of my own posts:

Ed doesn't react to non-medical pain much at all, but it took several huge men to hold him down in the hospital just to have his blood pressure measured.

A month ago he had to have a PPD for tuberculosis done because two people in his day program just converted to positive. It took me and two nurses to hold him and he was still struggling so hard that it is unclear whether or not it was trauma or actual TB exposure that gave him the swelling on his arm.

In any event, we have to do it all again next month...

To have a tooth filled, he has to have general anesthesia in a hospital operating room -- at a cost of over $10,000 last time, and we don't have dental insurance!

***

[My son] completely ignores any deep pain or sensation. For example:

hunger ...deep aches (like ear aches, stomach aches) etc. He has an incredibly high threshold for pain. Recently he burned his hand on a sparkler, and we didn't know it [until] an hour after when we noticed the blister.

***

E. [age 12] is the same with pain. If she complains the tiniest bit, I know it is serious. Once when E's ear drum ruptured, she said, "Mom,there's this funny sound in my ear." My [fullterm] son would have been
howling, but not E. One theory is that she endured so much pain in the NICU that her body can just shut it out.

***

J. [age 9] tolerates illnesses and falls well; in fact, he rarely
complains, and he can be really sick before I realize it... J. can have strep throat and 103 degree fever and act as if nothing is wrong... But with procedures such as an injection or dental work, J. goes ballistic.

***

"[My daughters -- born 6 weeks early] seemed insensitive to pain as infants. I anguished that they had been damaged irreversibly, in some psychic sense, because they had suffered through pain while, I imagined, other infants were learning that the world is filled with caresses... One of my girls
remains fairly insensitive to pain ...the [other] issue with her is lack of trust in the world. We were trying out a new church when the girls were about 2 1/2. Against my overprotective tendencies, I left them in the hands of the nice nursery workers. I returned to find [this daughter] in hysterics. It
turned out that one of the helpers was wearing a white outfit somewhat like a nurse's uniform. All I could get out of this child was 'hurt, hurt, hurt!'

It was odd because she really hadn't been in a hospital ...since she was 5 1/2 months old...It is as though her fears of physical pain have been transformed
into a fear of psychological pain. In kindergarten this year, she remains largely apart from the other children. When pressed she tells me she is afraid the children might be mean...

"I can't help thinking that [my daughters'] experiences shortly after birth have been imprinted on their templates. Experience can overwrite some
of the pain, but I believe it will always be there for them.

***

"V. seems to have no real sense of danger, and I'm starting to seriously wonder about it. If he's hurt himself a few times doing something silly, he usually won't do it again. But if it's a new experience, he'll try
to do the most unbelievable things. On Saturday we went for a ferry ride -- a huge car carrying ferry. We were on the top deck, and he kept trying to climb
through the railing -- it was about 40' sheer drop into the deep sea -- and he desperately wanted to go over the edge. I don't know any other child who wouldn't be scared of the obvious danger...I remember that he had to be taught
to crawl, and to do many other basic things that a full-term child seems to be propelled towards instinctively. And I really wonder what it is that's
'missing' about his perception of danger, and what this means for the future.

***

"Wow, another topic that I can empathize with! Or maybe in this case it should be sympathy...I will never forget the first time (and last) that I took the kids [boy, girl twins] to an ocean resort. They were 2 1/2 and I was
prepared for the sight and the sound of the ocean to frighten them. Well, I was the one who got the fright since they both ran *towards* the ocean... I
seldom take them anywhere [at age 5] without help and some places we just don't go because I know it would be a disaster, even with help.

***

"My son also has no fear of the truly dangerous. A fly, however, will reduce him to a puddle of shrieking tears."

***

J. is 7 1/2 and still shows no sense of danger. In fact he has
been running in the street these past two weeks. I wish I could get through to him how dangerous it is. We live on a busy street and I live in fear that he will get hit.

***

J. has no fear of fire. We still have to watch him closely when we cook out. Once, at a wiener roast, he picked up a piece of hot charcoal...and burned his hand. When he was younger, he actually unscrewed a light bulb that was turned on! His fingers were black, and the light shorted out! One would think a child would withdraw his hand once he felt the hot bulb!

***
Lot's of food for thought here...

Helen

Anonymous said...

It is both truly wonderful and truly awful to find other families who have struggles like ours. Sometimes I feel so very alone and very isolated in our fight for someone to pay attention to the needs of my child. He is a miracle ... his success in many areas is a testament to his tenacity and perserverence ... BUT EVERY day is a struggle! At almost 6 years old he still receives 1000-1200 calories a day via supplements and does not eat well because of long term reflux, texture and oral aversions etc etc etc ... and he 'looks fine, a little skinny perhaps, but fine!!' (like you, I want to scream when I hear this!)
Thank you for this BLOG! I've book marked it!
Becky, mum to a 26 weeker and a FTer