Friday, April 6, 2007

My Fear

(well, one of them anyway)

My fear is that Paige will never live independently.

There are many degrees to the impact that prematurity has on a child. Those who have children who are so impacted (quad spastic CP, severe mental retardation, etc.) come to realize, early on, that their child will not live independently. (I'm not by any means dismissing the struggle)

Then their are those of us who have a child that is on teetering on the fence. Depending on which way they land as they grow, will determine if they can live on their own.

My child is very intelligent. She can dress (as long as there are not buttons or hard snaps) and feed herself. If you met her on the street you would most likely not realize what she struggles with inside. Her physical issues are hard to see.

So, why the fear?

Her mental health seems to be deteriorating. Her anxiety and OCD are out of control, despite therapy (and meds-which we are still trying to find the right one). Her "thoughts" consume her days. They make her do things that are not normal. Her thoughts tell her to hurt her baby brother, so she does (last one was 4 days ago). We were just told that she should never be left alone with her brother, even for a split second. She agreed with the psychologist and told us that the reason is because her thoughts are telling her to harm him on a daily basis, even when she is happy. Her thoughts tell her to hurt herself. So she does. The kids at school call her weird.

My precious little girl is slipping. I want her back.

I've been crying a lot the past few days. Those who know me would be surprised. I am not a person who cries easily. I am a fighter. But, when you are told that you should not trust your own child, for the next few years-at least, to not hurt her brother or herself, it slaps you down.

I'm not giving up on her. Hubby and I work hard to help her become someone who will be able to fit into society.
But nonetheless, I have this fear.


Aidan's mom said...

I wish I could reach out and give you a hug. With my background in medicine, my husband tells me I know way too much and that a little ignorance might be a good thing.

I worry about lots with Aidan. I have worried about each and every milestone that approaches and so far he seems to be telling me to calm down and enjoy being a mom because he is doing them all on time.

But I do worry about school age issues that may crop up, etc. When my DH asked me a couple of months ago what my biggest fear is, I told him it was that Aidan wouldn't be an independent adult. I don't need my son to be a rocket scientist to make me happy (though that might have been an old dream)...I just want him to grow up like an "average" kid, find a career he likes, get married and have a happy life.

That isn't too much to ask, is it? Isn't that every parent's wish?

My DH and I make a good team because we look at things differently a lot of the time. I am the worrier and he is the "everything will be ok" guy. I think this probably makes us good parents because we each pull the other a little more toward center.

I am trying hard to not let my watchful eye on potential problems stop me from enjoying all of the wonder of having him as my son.

I am so sorry you are having a rough time and dealing with this fear Stacy. Hugs to you. You are a great mom.


23wktwins'mommy said...

Can't go there emotionally tonight, but I had to comment...what amazingly beautiful eyes...stunning.

Lisa said...

Yes. Independence. That is what it all boils down to for me, too. This is a hard thing to have "unknown" about your child.

Joan McKenty said...

I am so sorry that you are struggling with this. I know it has gone on for a very long time.

I've commented before about the despair I felt when my child was younger and I could not find help anywhere. It is a terrible feeling - watching your child suffer and not being able to help, knowing what the path you are on will lead to if you don't find help - like spiraling down a tunnel with no one to help lift you up. And I know the fear and despair of being in that situation.

The bigger issue is that there has not been adequate and appropriate help for your child and your family. There has been no light in the dark forest to guide you. And sitting alone in that dark forest with your suffering child without a light is heartbreaking.

I believe there IS appropriate help out there somewhere and that it can be found. What you have tried so far has not worked. Trust your instincts to go looking elsewhere for help.

My greatest salvation in all of this has been to learn to trust my instincts and to follow the path that my hunches and instincts led me. If something the pediatrician, or developmental pediatrician or psychologist or neuropsycholist said to me did not ring true for me and my experience with my child, I accepted the truth of my experience, hunches and knowledge over theirs.

The first person who was able to truly help my child was a gifted occupational therapist who understood the connection between the mind and body. It may not be an occupational therapist that helps you but let me tell you, when you find a person who truly understands what you and your child have been through and who REALLY helps, and sets your child back on the path of normal growth and development, it is the most wonderful feeling in the world.

I know our OT has a foundation in the work of Stanley Greenspan
Check out his website. He has done research and work in prevention and treatment of children with bipolar patterns, among many other things including autism and autism spectrum disorders.

You, and I, and every parent, are the greatest expert on our children. In your heart of hearts, what do YOU think is going on. What have YOUR hunches been? What do YOU think might help? Trust your own mind and thoughts on this and take a step to follow some of those hunches.

And if there are angels in the universe, I hope that one of them helps you,

Joan McKenty

Chris and Vic said...

I wonder if you could invent a game with Paige, that she would send you some kind of signal when she is hearing voices that tell her to harm herself or her brother, or anyone else for that matter. If the game/signal was something that was fairly complex, it might distract her from the voices. For example, can Paige wink? If she had to learn to wink, it might be a distraction and she might be less likely to act out the imeratives from the voices. Or can she sign/fingerspell? She could learn to sign "voices" or fingerspell it, and that would slow her down or distract or stop her from following through on hurting herself or others.

Maybe you and the teachers could put your heads together on this, and come up with something that is consistent both at home and at school. It would alert the adults around her and give her pause.

Does your local children's hospital have a behavioral clinic? If not, can you get a referral, and travel to a children's hospital (maybe over summer break) that could be of more help? Do you still have connections in another city---I remember that you moved from a large metropolitan area a year or so ago.

You need to protect both of your children and yourself. Is there any respite care available in your area? Is there anybody at school who understands or has a good rapport with Paige, and would they be interested in some summer respite on a voluntary basis? (A student teacher once did this once a week during the summer following her placement in Vic's classroom. It was sooo cool.)

I'd hate to see you put ALL your hope in the meds. I think there needs to be other elements alongside the meds, don't you?
Chris and Vic

Carla said...

My son will never have it; my daughter on the other hand (like yours) is "teetering on the edge". It's hard to tell how they will be in 10-15 years. Just hope and pray and do everything you can so that things start going uphill instead of downhill.

Helen Harrison said...


My heart goes out to you and your beautiful daughter!

The fear and uncertainty of this situation must be agonizing.

I have a few questions: Did you see any warning signs of trouble to come when your daughter was an infant and very young child? Do you see her current situation as an evolving issue, one that has always been there in some form, but seems more worrisome now that she is older? Or do you think it is a totally new development?

You also mentioned your daughter's mild CP. How did it become apparent to you? Does it seem that one side is more affected than the other?

I've heard that laterality (side of brain) of brain injury in stroke victims can make the person either happier than they were normally or more miserable. I have noticed in listening to other families of preemies that their children sometimes are unusually one way or the other, and I've always wondered if this is related to the side of the brain that sustained the greatest degree of injury.

I've also read that people with schizophrenia have enlarged ventricles. And that most preemies also have enlarged ventricles with about double the amount of cerebro-spinal fluid (in the ventricles and elsewhere) as do children born at term. I can't help thinking that this is somehow related to the psychiatric problems so many of our children seem to be experiencing.

Anonymous said...

PE based on what you posted you should get a 2nd opinion. Off the top of my head I came up with a different dx completely (bipolar with psychotic features) that would also be approached with different meds.

Helen this woman is posting about deep inner pain. Do not use this as a opportunity disguised as support to dig up more ammo for your agenda.

The Preemie Experiment said...

Aidan's mom wrote: "I just want him to grow up like an "average" kid, find a career he likes, get married and have a happy life."

That's what I've always wanted for Paige too. I have always said, "I don't care if she shovels sh*t for a living, as long as she is happy." I think I put so much thought into her happiness because it is that very emotion that she struggles with.

23wktwins'mommy wrote: "what amazingly beautiful eyes...stunning"

Thank you. We've had people stop us in public and comment on her eyes. Not just once or twice either. You cannot even imagine what that does to a child with anxiety issues! For awhile she used to cry and say something like, "why are people always staring at me?" Another comment we get quite often is that she is an old soul and that her eyes show it.

Joan, thank you for all of the information. I will be spending some time looking into it all. Although we are finally getting help now, it's going to take some time to recover from all of the doctors/therapists/psychologists that told us that her issues were all in our heads. We knew she had real problems but no one would listen. We call it the "cuteness factor". Her current psych touched on this topic recently when discussing how the adults in her life let her slide on behavior issues because of her looks and her early birth. Everyone feels bad for her but what they don't realize is that their actions hurt her and are not teaching her how to be a responsible human being. I'll be talking more about this soon.

Chris wrote: "If the game/signal was something that was fairly complex, it might distract her from the voices."

Chris, thank you too for all of the information. We did use a technique similar to this for awhile but, because of the OCD, the distraction then became a tic. Her current psych now has her physically removing herself from the room when she has thoughts of hurting her brother. It works sometimes but not always. It causes me pain when I think of what she has to deal with in her head all day!

Anonymous wrote: "Off the top of my head I came up with a different dx completely (bipolar with psychotic features) that would also be approached with different meds. "

Hi Anonymous, Her psychiatrist did mention bipolar, based on her reaction to SSRI's. It wasn't the first time it was mentioned to us so I honestly wasn't surprised. I told him that she was going to rage when he tried the SSRI. Of course I was hoping that I was wrong and that she "just grew out of it." As far as the psychotic features.. I agree that may become more apparent as she gets older. For the time being, no one wants to call it anything other than OCD based on the type of thoughts she has. Thanks for the head up. We are headed back to the psychiatrist soon and I will mention it.

kp said...

I've been thinking about you since I saw your post.

As the mom of an extremely troubled child myself (bipolar, SPD, etc)I need to tell you that there is good help available, that it can be hard to find, but not to settle for anything less than excellent care for your child. This is not as good as it can get.

There are times when "more of the same" is not the answer. It may be time for a major overhaul of your treatment plan for your child.

I'm going to give you some advice. Please take this as coming from someone who has been where you are, but also take only what you need.

First, look at the stressors in your little one's life. You say child is socially ostracized at school. For a child with even the least bit of social awareness, as I'm sure you know, this is torture.

My advice would be to find her a different school. Not all schools are the same in terms of social milieu. Some are extremely accepting of kids who are 'odd' and 'different.'

This may mean a private or alternative school, with all the sacrifice that this involves. But it is worth it to have a place where your child feels safe and welcomed.

It may even mean moving for the sake of your child's education. Don't rule it out.

But it also may be easier than you think.

My sister's child with PDD and anxiety disorder (but very bright) found a warm welcome at a small church school. The tuition is not onerous, but figuring out the commute to school was.

My child with bipolar disorder and sensory issues is at home in the predictable rhythms of a Waldorf school. I sleep in the living/dining room of a very small aparment in order to afford the tuition, but it's worth it. On the other hand, the school is a mile and a half from my door.

Now, therapies: there are excellent child psychiatrists and therapists, there are good ones, and there are adequate ones. You may need to upgrade, say, from good to excellent.

First, if your child is in crisis,(getting worse) her therapist should be offering you increased therapy time in recognition of that. She or he should be open to receiving and giving communication from you, from the school, from the psychiatrist, from the OT/PT. etc

You should have the feeling that therapy helps.

My child needs to be seen twice a week, typically; more often if he's starting to 'lose it,' and can get by with once a week if he's really doing well.

That's just how it is. He's not heurotypical or 'normal', and the coping skills you and I take for granted have to be painstakingly taught and incorporated, in therapy and at home.

Psychiatric care should again be top-notch. There should be seamless communication between therapist and psychiatrist. Polypharmacy (more than 2 meds) should be avoided except in crisis, and the goal should be to have your child on the fewest meds she needs in order to be able to engage her other coping skills.

Any med changes need to be closely followed, with actual office visits. You should have the feeling that you can call the psychiatrist at any time and can easily get an appointment when things start to go badly.

Your psychiatrist should always be looking at the overall health of your child, with an eagle eye out for any side-effects of medications, and should freely order any tests necessary to ensure the health of your child.

My child sees the psychiatrist at least every 2 months when stable (no med changes or dosage changes) and much more frequently if there are changes to his regimen.

Your psychiatrist should always apprise you of new research findings, developments of new treatment protocols, and of course possible risks and benefits of any medications.

If your child is not getting at least this level of care, please find a new doctor.

Again, you may need to consider moving. There are parts of the country where it is much easier to find good care, and parts where it's harder.

The same issues apply to other therapies. We had what we thought was a very good OT addressing my son's sensory and muscle tone issues. Then we changed to a different practice due to time constraints, and WOW!

I could not have conceived of this level of excellence and expertise. I literally did not know that it was available, and I work in pediatric rehab.

I offer this in the spirit of somebody who has been in the position of crying every night, wondering if my child would ever be okay.

Now I feel pretty confident that we're on the right track. But we had to get the right help.

Hang in there. I'll be thinking about you.

The Preemie Experiment said...

I'm addressing Helen's comments in a separate comment because my 1st one was getting too long.

Helen wrote: "I have a few questions: Did you see any warning signs of trouble to come when your daughter was an infant and very young child? Do you see her current situation as an evolving issue, one that has always been there in some form, but seems more worrisome now that she is older? Or do you think it is a totally new development?"

Hi Helen,

Yes, her issues were there from birth. I'm going to be doing a post on sensory issues soon so I won't get into it all now but...

When she was a baby she cried all of the time. Her docs would tell us that it was an underdeveloped nervous system and she would adapt. The only thing that helped was the Wilbarger Brushing Protocol. The first time her OT mentioned it to me I was highly skeptical. I am not a person who thinks "outside of the box" much. But, it helped.

I believe she has always had OCD. When she was a toddler, her room had to be exactly perfect. If the drawer pulls on her dresser were turned, she would freak out. If her shoes were not perfectly lined up in her closet, all hell would break loose.

Her tics were also there from a very young age. Eye blinking gave way to hair twirling which would eventually give way to a new one.

Self injurious behavior was also there from a young age. When she started head banging her ped said that it was normal. When she started scratching herself until she bled, he questioned what was going on in the home to cause it (again-it must be parents fault).

I do think her issues are made worse by stress, but they are always there.

Although she loves her brother, the attention paid to her is less and she hates it. As she was getting into the car 2 days ago she said these exact words, "Mom, do you know why I'm acting this way? I want to be the center of attention." Hubby and I have NEVER said this to her. I mentioned it to her psych and she said that also has never said this to her. When I asked Paige where she heard that she told me, "my thoughts are telling me this."

Helen wrote: "You also mentioned your daughter's mild CP. How did it become apparent to you? Does it seem that one side is more affected than the other?"

It took forever for a doc to even slightly admit that she has CP. It's been called everything from muscle weakness to post viral fatigue syndrome. When she was a toddler her PT wrote something like "left side weakness". When she was 5 her OT measured her hand strength. Her left had was considerably weaker than her right. (interestingly Paige is left handed) The PT then tested her large motor skills and agreed that her entire left side is much weaker than her right.

When we moved to a new state her new neuro finally diagnosed her with mild CP but would not elaborate because he felt it was so mild. It's not mild to her though. She fatigues so easily when writing. As it is now, she types a lot of her homework.

As far as MRI's. I'm incredibly frustrated with the interpretations that we have from all of hers. The first one mentioned "abnormal corpus collosum and possible right brain atrophy". The second one said something like "normal MRI indicative of a the gestation at the time of birth". The 3rd one said, "normal MRI". 3 MRI's over the span of 3 years.. all different conclusions.

terri w/2 said...


You are absolutely correct (again) about different sides of the brain causing vastly different behaviors. We JUST covered this indepth in nursing school. .when we went over the right sided brain damage (from strokes in the elderly) my first thought, was - this sounds EXACTLY like my daughter, J (who never had an IVH), but definitely must have some damage due to hypoxia, etc etc.

Behaviors commonly seen in left sided strokes include: slowness, cautiousness, anxiety when attempting new tasks, depression or catastrophic response to illness, sense of guilt, feeling of worthlessness, worries over future, quick anger and frustration, intellectual impairment.

Behaviors see in right-sided strokes: impulsiveness, lack of awareness of neurologic deficits, confabulation, euphoria, denial of illness, poor judgement, overestimation of abilities (places them at risk for injury.) And there is a loss in ability to hear tonal variations.

Also, Non-verbal learning disorder seems to be a common thing in preemies, and this is often due to right-sided brain damage. These kids are often HIGHLY verbal, have excellent memories, speak early. However, they also are easily frustrated with complex tasks (puzzles, organizing, math) and also dislike changes in routine. It's called Non-Verbal Learning Disorder, as these children have few skills in reading other people's "non-verbal language" of which 70-80% of our communication is comprised of. For lots of excellent information on NLD, go to When my daughter was diagnosed with NLD, the neuropsych told us that he sees "lots of preemies" with this in his clinic. .my advice, if you suspect your child has this, don't delay in getting a dx, as there are interventions that can be done. And, don't rely on your school picking up on NLD, as from what we've found, are clueless about this type of LD. These kids do so well in language areas, that it assumed they have no deficits in other areas.

Helen - also, you are right about the increased ventricular size leading to schizophrenia. My older sister has schizophrenia, and she was born with hydrocephalus - not as a result of prematurity, but perhaps as a result of a complicated delivery, as her head size began to increase AFTER the delivery, but was a normal vag delivery. There is quite a lot of info in the medical archives from what I've seen that seems to have a correlation between increased ventricular size and schizophrenia. I would imagine preemies are at a terrible risk as IVH's are "intraventricular" where the bleeding occurs and causes damage and often enlargement of the ventricles.

Thanks for the info.

PE - I used to do photography, and Paige's eyes are just amazingly beautiful. .yes, she does look like she is an "old soul".

Helen Harrison said...

Just opened the New York Times Sunday Book Review to find an article by psychiatrist Peter Kramer on a book about auditory hallucinations [Muses, Madmen, and Prophets: Rethinking the History, Science, and Meaning of Auditory Halluncination, by Daniel B.Smith]

Here is an excerpt:

"A recent study shows that schizophrenic patients who hear voices activate a language-related region in the right brain when reading, while people who do not hear voices use the left. The researchers suggest that because the "wrong" side of the brain helps process words, hallucinators may generate inner speech that is not attributable to the self. This conclusion is speculative, but the study shows the sort of findings researchers expect -- glitches in the biology of producing and interpreting language. Other investigators have had some success treating these halluncinations by applying magnetic fields to specific parts of the brain."

Stacey with an 'e' said...

I've given this topic a lot of thought too. I guess if you have a baby with a high risk of big problems, you almost have to.

After my daughter was 31.5wks, with a 0 Apgar and severe hypoxia, I was absolutely paralyzed by the thought that my little girl would never live independently. (This gets into the topic of your previous post a little too.) I got counseling from a nice psychologist who had three kids of her own and totally didn't get it.

It helped least I stopped feeling the strong urge to pack my bags and flee the situation. This was my second preemie and the first NICU experience had been *so* difficult (especially for a 30-weeker), that having another preemie, especially one who probably had a significant brain injury, made me want to forget the whole pregnancy and birth had ever happened.

Both my kids are doing pretty well. Their problems *pale* in comparison to what you're going through with Paige. But I still have moments of preemie-mom paranoia...moments where I'm sure both of my kids have brain injuries that will affect their ability to live independently.

They haven't reached school age yet, and my little girl, the one with the 0 Apgar...she's only 3. She seems fine...apart from needing glasses, but I already have the feeling she's a little different from her peers.

What is it exactly that bothers me? I can't even put it in words. I don't know. Am I just paranoid? Could be. Her chronic constipation and difficulty potty training kind of freak me out...even though I know those things happen to perfectly normal, full-term kids.

Like Lori, I resolved way back in the NICU days that I could live with Cassie's disabilities if she could be happy and find a life partner (hopefully a husband, but whatever works best for her) who loves and supports her unconditionally. I still need to remind myself of that resolution from time to time. Compared to, say, wanting her to get into Harvard, it doesn't seem like much, but it is *so* much!

At least I feel like I've learned that much from my experience. It really forces you to focus on the important things in life...which I imagine will change over time as I discover just what she's capable of...and what my son is capable of...and what their true potential really is.

I hope (desperately) that group homes and special schools don't become a real part of my world...but then, I never thought prematurity and special ed would be either!

((hugs, Stacy)) I know you don't get to choose this path and I always scoffed at those who told me how 'strong' and 'brave' I was...I didn't feel like I was those things at all...but you certainly have my admiration and whatever supportive vibes I can send your way!


Helen Harrison said...

To TPE who said "If the drawer pulls on her dresser were turned, she would freak out."

Ed has always freaked out about drawers that aren't entirely closed. He can spot a kitchen drawer 1/8 of an inch askew from across the room. This is one of the clues we've had that his vision loss is not quite as severe as the docs thought.

Miracles said...

Just wondering if anyone has ever brought up Autism to you? My twins were born at 26.6 weeks and our Ped is sending us for an Autism assessment for one of them. A lot of what you are describing my Ped also brought up to me. Especially things/items needing to be in order. I haven't been able to find a lot of in depth info on it yet. I find everything is very basic info on the internet. My heart tells me my daughter does not have Autism but I feel it is something that should be looked into because of a cyst that was present at birth on her brain that not one of the Neo docs were able to give us a straight answer on. All we ever heard from them was "it could cause this, or that" very frustrating.
Good Luck.

Helen Harrison said...

A recent study on adolescents born at very low birth weight (<1500 grams) found disturbed white matter connectivity throughout the brains of these former preemies.

The researchers particularly noted disturbed white matter in the external capsule and superior fasciculus, white matter tracts connecting regions implicated in social cognition.

This is identical to findings in (non-preemie) adolescents with autism.

The preemies studied here also had high autism symptom scores, though apparently none had been officially diagnosed. It may be, the researchers hypothesize, that preemies have a milder (or some cases, not so mild) disturbance in brain growth of the same kind that leads to autism in non-preemies.

The initiating cause of autism may be the physical insults to the brain from prematurity and NICU treatment, or from the prenatal causes of the prematurity itself (for example, infection or inflammation) or from NICU treatments such as being on a ventilator. Genetic factors (and apparently there are well over a hundred different genes implicated) may help modulate or intensify the reaction to these stresses, as is apparently the case in ROP or BPD. The study is Skranes et al. "Clinical findings and white matter abnormalities seen of diffusion tensor imaging in adolescents with very low birth weight" _Brain_2007;130:654-666.

Anonymous said...

Helen, you caused so much trouble on ND's blog that he had to shut down. PLEASE don't do that to this blog.

Helen Harrison said...

To anonymous who said:
"Helen, you caused so much trouble on ND's blog that he had to shut down. PLEASE don't do that to this blog."

I did not cause the problems on NDs blog, the anonymous troll did. And I doubt that ND is shut down for more than a time out to give the troll time to sober up, or get back on his/her meds, or tire of throwing online temper tantrums.

I am in friendly communication with Neonatal Doc off the blog and he knows what's going on here.

And so does The Preemie Experiment.

The Preemie Experiment said...

I knew the "real" Helen did not write the statement that "some of our children were just not meant to be alive." I've known Helen long enough to know that the wording was not hers. Not to mention, I was hurting when I wrote my post. I know Helen would never say a one liner like that following my post, especially without following it up with studies to back it up.

I went back and checked my site meter and now know for sure that it wasn't her.

I have absolutely no problem, not one, with Helen posting here. She did not cause the problems on ND's site. Yes, Helen posts research that can be a huge reality check at times but I appreciate all of the information. Every reader out there needs to know that you do not have to believe the research and no one will judge you. It's just research. Read it and move on. File it for later reference or don't take up the space in your brain with it. But, it is important. There are many preemies who are suffering and the truth needs to be told so the future can be better for the preemies born down the road. Besides that, there are many parents who are thankful to have found this site (and others) to know that they are not alone. I get emails from parents who are not going to post in such a public forum but are thankful to have the studies to bring to their doctors to prove that it's not all in their heads.

Let's let all of this end now. I appreciate EVERYONE that posts here. We have all worked hard to make it a community that can co exist despite different views. I will not let someone who is not brave enough to post under their own name ruin it for all of us.

Lori said...

That's a wonderful photo of Paige! I'd love to see a full picture of her, too, if you have one.

Take care,


Helen Harrison said...

To Terri w/2 who said: "I would imagine preemies are at a terrible risk as IVH's are "intraventricular" where the bleeding occurs and causes damage and often enlargement of the ventricles."

This is true, but, in addition, diffuse PVL occurs throughout the white matter -- perhaps from perinatal infection and/or from preterm birth itself and/or from NICU treatments such as the ventilator or steroids.

These changes in the brain can be hard to detect by NICU ultrasound, so a child could have a normal ultrasound and diffuse PVL might still have occurred.

Diffuse PVL is, however, detectable on MRI scans. Diffusion weighted imaging MRI gives an even better picture of tissue loss.

These diffuse, pin point areas of PVL or brain tissue loss cause the surrounding tissue to collapse into the tiny hollow spaces left behind. Cerebro-spinal fluid then fills up the spaces in and around the contracting brain. This is sometimes referred to as hydrocephalus ex vacuo.

A good discussion of diffuse PVL has been written by Dr. Joseph Volpe: "Cerebral White Matter Injury of the Premature Infant--More Common Than You Think" _Pediatrics_2003;112:176-180.

I would imagine that having cerebrospinal fluid in place of tissue could cause problems in a number of ways. First there is the original tissue loss that the presence of this fluid indicates, and there is the derailing of normal growth and connectivity that would have originated in these lost tissues.

I would also think excess fluid might change the normal pressures in the brain, and could, perhaps, cause problems this way as well. Any docs who would like to comment?

In addition to overall brain tissue loss and fluid buildup, certain brain stuctures such as the corpus callosum, cerebellum, hippocampus, etc., can be disproportionately damaged or distorted.
See, for example, Peterson et al."Regional brain volume abnormalities and long term cognitive outcome in preterm infants" 2000;284:1939-47, as well as the two studies from _Brain_ that I cited here previously. Structures and brain areas that are disproportionately "hit" often seem to vary according to the type of pre- or peri- or neo-natal stresses to the brain , such as intrauterine growth retardation, BPD, or IVH that a particular child may have experienced.

Helen Harrison said...


At dinner tonight, DH and I were discussing Ed's temperament when he was young. He was extremely volatile then (now-- not so much), but he also seemed capable of having great fun. Music, especially, made him happy, especially if he was in control of it.

DH and I were both wondering what makes Paige feel happy?

twinsx2 said...

A couple of random thoughts here. My son who had the IVH is higher functioning. In a regular education classroom with minimal supports. My son without the IVH but a host of other abbreviations, NEC, ROP, PDA, had an MRI that was “entirely normal” he is severely mentally impaired.

After my second set of twins was born, at term, the one came down with a fever. It, unfortunately, was the fever that was just a tad too high for the doctor’s comfort for a two-week-old baby. We were admitted to the hospital. I mentioned that I preferred a scalp IV if one was needed. After all the testing, my son was brought to his room; scalp IV in place, hooked to a monitor. The nurse put him in the crib and left me with him. A while later he stirred and was hungry. I attached the nipple to the premade formula bottle. Lowered the side of the crib and scooped up my son. I gathered the end of the lead wires in my right hand as I supported the baby’s head with my left. I also held the bottle in my right. I sat down, pulling the IV line with me, making sure not to snag the hep lock on the blanket or the crib side. Then I popped the bottle in his mouth and realized that I had done the above without even THINKING about it. I was not clumsy at all. It was as if I had never left the NNICU although I hadn’t been there in 7 ½ years.

With my more involved preemie, the alphabet soup above, I also went through the self-injurious behavior and no sleep. He is still locked in his room as he is a runner and essentially non-verbal. I often asked Helen for guidance as to what she did for Ed at that age to see if it works for Alex. He has stopped banging his head although will do it on the rare occasion. It seems to hurt him now, so he doesn’t really seem to want to do it. Most nights he sleeps through the night. But, I remember when I couldn’t even drive the 5 miles to the grocery store because I might fall asleep behind the wheel. Or seeing the bus come home at 4:30 and thinking, “No, it’s not that time already. Please let it be some other bus!” I only had to deal with him from 4:30 until 8:00 and that was too long. We couldn’t have anything on the walls because he would bang his head so hard against the walls that the pictures would fall off and break. I used to wonder for what we “saved” him. For a life of pain and misery? For now though, we are back to the mentally impaired but happy (for the most part) phase.

Let puberty begin!!!!!

Carla said...

I know exactly how you feel. I would dread seeing the bus in the afternoon too. It's not quite as bad anymore, he's pretty much harmless now, but the constant squealing and bouncing off the bed, couch, stairs sometimes drives me up the wall. When I asked the doctor for ideas, all he said was get a squirt gun and some earplugs.

Lori said...

Just thought I'd add a note about what I experienced today...a wonderful, amazing, (full term) birth.

My best friend delivered her second baby this afternoon, Abby. And somehow, I was blessed enough to see it. Honestly, I'd forgotten what it's "supposed" to be like. It was magical. She was 7 lb, 3 oz (HUGE, in our world). She was breathing, she was pink, she was nursing. All the things babies are supposed to do.

It was such a joy. So happy, relaxed, without stress. So foreign to me, sadly enough.

Hope all of you are well.

Take care,


Amanda said...

I just stumbled upon this blog. Boy, I can really relate to many things you have written. The shocking part is, my son was born at 33 weeks and 5 lbs! When we were discharged, nobody warned us of the potential problems, because he was just barely preterm and had an uncomplicated 2 week Special Care stay. Hubby and I were so grateful son had come through the experience so well.

But, he cried constantly as a baby. I don't know how many times during his infancy I told my husband that our child "hated me." I noticed gross motor delay at 4 months, though it took till age 6 months (chronologic) to get the Pedi to deal with it. He's had MRI, metabolic,and all the other tests done with negative results.

So now, at age 6, he's had:
PT age 6-18 months, ST age 18 months-nearly 6 yrs, OT from ages 3.5-nearly 6 years.

He has been diagnosed with: gross and fine motor delays, speech delays (including some stereotypical things like echoing.) At age 4, he got a diagnosis of very mild PDD-NOS, sensory integration dysfunction.

His speech problems were more language-related, and that has mostly resolved. He was discharged from ST last Fall. He had developed some stuttering at about that time that the therapist said MIGHT be normal for his age, but if it persists for a year we'd have to address it. Well, he is still doing it so I have a feeling he will be back in ST next Fall. He lives with his sensory issues much better, though some still persist. He was discharged from OT last Fall, but his gross motor was still a year behind. Now he takes martial arts to help with that, and he is quite frankly, the worst in his class! (But we still praise him).

He has come a long, long way from when he was 3.5. But he is still not quite like other kids his age. More immature, speech doesn't flow like theirs, not as active due to his sensory and motor issues. But, he began Kinder this year and has done well.

I wonder how many other 'barely' preemies are out there who have these problems?

I did have a week of Mag, tons of Terb, and steroids too.

MommaWriter said...

Amanda -
Don't know if any other preemies out there develop speech dysfluency problems, but I was interested to see that your son has started stuttering. Mine (born at 30 weeks and now 5) also stutters and has been doing therapy for that for about 6 months now. If you see this comment, please feel free to e-mail me at preemiewriter (at) gmail (dot) com. I'd love to be in touch with someone else who's facing these issues!
Stacey (the one with an 'e')

Lori said...


It's been a week since your last post. Is everything ok? I really hope the troll hasn't sent you into hiding?

I miss reading.

Take care,


The Preemie Experiment said...

Hi everyone,

Thank you for your kind words of understanding and encouragement. Thanks to all who offered up some ideas.

Life was not better in our house last week. I think the main reason was because it was spring break and Paige had too much time on her hands.

I think one of the hardest aspects to handle is that I know she is not a maliscious child. When she reacts to her thoughts telling her to do something, it's almost as if she is in a struggle with those thoughts. She used to be good at removing herself from the situation, to avoid hurting herself or anyone else, but now she just seems to be reacting to those thoughts too quickly.

My heart aches for her.

I'll keep everyone updated.

K said...

I have just stumbled on to your blog and have read a few of the entries and am somewhat relieved by this openness about "the preemie experiment". I am a 23 year old preemie, and have long felt the same way and felt that I must just be cynical for thinking that way. I am lucky as far as preemies go; I do not have and major physical disabilaties (aside from being small and under weight), and no disorders such as CP or MR. I have had depression, anxiety, and OCD since I can remember. I began being treated for depression at age 12- i wish it had been age 6. I can put a check mark next to almost every item on the "preemie syndrom" list. I have graduated highschool and although my english and writing skills are normal, my math skills are...well, almost nonexistant. I can barely do even the most basic adding and subtraction and have failed almost every math class (though I was never placed in a SLD class because my mother was an SLD teacher and knew the system was incompetent and did not want me stigmatized).

In 1984 there was not as much research into the affects NICUs or premature birth has on a preemie as there is now. So I grew up without much information (some information, if my parents had known when I was still a young child, could have dramatically improved my development). I wasn't mentally retarded, so doctors just assumed I was ok. As I grow up I have more and more "minor" health problems that are now attributed to being born premature. I still have waaay more questions than answers and I feel like I'm totally in the dark. I wish a doctor would look at my medical history and explain it to me. (A few years ago I was in the ER and my mom happened to see one of the head doctors of the NICU from when I was a baby there...she called him over to the room and blubbered thanks to him and his team, and re-introduced me to him... but he wouldn't look me in the eye, and he left quickly. He isn't in NIC or pediatrics anymore, and I don't know why. That instance had always left me wondering why ).

I've had severe depression and thoughts of suicide since I was about 8 or 9, and attempted suicide multiple times. I've been on many different antidepressant meds and combinations and seen many doctors. I am very glad that your child has seen a psychiatrist early. I have been through so many different meds and approaches and it's been almost 12 years and the doctors still have not been able to find the right meds that work for me (although thanks to Xanax my anxiety is under control and my OCD is almost completely gone. And I have been on a new combination of drugs for a few months now and I am feeling fine! So this could be the one!).

I am also on the fence. My parents had me when they were a bit older and I am an only child. After high school I stayed at home and went part-time to the community college, and I have been going to a local college for the last 5 years. Fall will be my first full-time semester. I do not want to be a financial burden on my parents- i know i already am (though my mother is always trying to convince me I'm not). Just a year ago I was so impared by depression I thought that I would never be able to live independently. But now I think that I may be able to, with some help. I am trying really hard to become as independant as possible, because I also worry about my parents as they get older- one day I must take care of them!
So I feel like I may be able to do it. I am looking into moving 30 minutes away (closer to school), to room with a friend. Ofcourse my parents will have to pay for that, and I desperately want to find a way to pay them back. I desperately, desperately want to be able to give back to my parents who had to give so much (financially and emotionally) for me.
So maybe your daughter will be able to be independent one day, a little at a time. I can't say that I'm living proof yet, but I do feel like there can be actual hope.

And as for the whole debate over NICUs and "saving" a preemie.... knowing what I know, and how I feel, I would not be upset if my mom had told me she would have chosen not to keep me alive in the NICU if she had known what suffering was ahead (though I'm sure she would say otherwise). I would understand. It is such a relief to hear that people do feel this way! It is something I have always felt, and think that I would feel if I was the parent of a preemie. I am sure my mother has struggled with these feelings before as well, though she would never admit to them (at least to me).

sorry this is such a lengthy reply!
thank you for starting this blog and sharing your stories! i feel less alone because of it

The Preemie Experiment said...


Welcome! Thank you for both of your recent comments.

I am glad that you found a combination of meds that is working for you. As of late, we seem to be on the right med path with Paige also. It's refreshing for both Paige and hubby and I.

I can see how you would feel that you need to give back to your parents. I'd like to give you insight on how parents feel. I'm sure your parents do not expect anything back from you and probably are just thrilled that you would think of how much they've given you!

I hope you will keep commenting on my blog. Your thoughts matter!!


Anonymous said...

We were just told that she should never be left alone with her brother, even for a split second. She agreed with the psychologist and told us that the reason is because her thoughts are telling her to harm him on a daily basis, even when she is happy...

...But, when you are told that you should not trust your own child, for the next few years-at least, to not hurt her brother or herself, it slaps you down

Hi. Here via a circuitous route that started with Orac.

I'm a trainee pathologist and I've seen a lot of really nasty stuff in postmortems (dismemberments etc.) without flinching, but this post just about had me in tears.

I think what really got to me is not the fact that she knows she hurts her brother, but the degree of insight she appears to have into both the risk she presents, and the reason why.

Knowing that you are a potential threat to those you love would be bad enough for an adult to deal with; I shudder to think how badly it must mess with your daughter's head at this age.

I don't really know what to say. I wanted to hug the lot of you.

The kids at school call her weird.
Your daughter is an "ex prem survivor" with (resultant) mental health issues (as described by you), in a class full of nominally "normal" children, and suffers because of it. How does/might she react to other kids who've been through the same stuff as her?

There's plenty of support groups for parents of prems, I'm sure... but what about the prems themselves? That's something that might be worth addressing, if it hasn't already. Just how many sub-30 and sub-25 weekers are there out there, anyway, and how old are they now? There's a sub-25 weeker who must be at least into her teens in Adelaide that I know of; the NICU at Flinders Medical Centre has a picture gallery of all the tiniest survivors with sequential NICU, toddler, young child and - increasingly - adolescent pictures, and they regularly throw parties for them, but I never got to hear about how these kids relate to each other.

Sylviemomof3 said...

Your daughter Paige is so precious and very pretty! Lilike was a term baby at 7 pounds who spent 7 days in the NNU at Flinders Medical Centre. Due to suspected sepsis (blood infection) from a high white cell of a band nutrophil of 70% at birth. DAily FBE heel sticks came back with no signs of infections though. Lilike spent 5 days on iv antibiotics and 2 days on thigh injection antibiotics. 2 days rooming in. 9 days in hospital total. The doctors said many times she should be home with her parents because she looked healthy and was demanding feeds and taking all feeds via bottle. The nurses wanted her to stay in the NNU for longer. I feel they became very clsoe to our baby girl. Paige would have won many nurses hearts during her NICU stay at Flinders. As many of the nurses in the NNU would have got to know Paige since her very early arrival Lilike was endured a stressful rapid birth.

Sylviemomof3 said...

Your duaghter is truly a miracle a survivor and battler very special and a miracle from God. She knows how much you love her with your wors of I love you to Paige. You could make a wonderful slideshow of her early arrival till now of how much your daughter is an inspiration to you others and how much you will always love and cherish her and that she is a miracle at With onetruemedia you can post the slideshow to youtube also. You can also show others how much you love Miracle Paige with pictures in a scrapbook and also to show her one day.
Anyhow. A few weeks later after Lilikes discharge. I was sent a discharge notice from the NNU that said although Lilike was treated as if she had sepsis. She actually had TTN (
Heres a slideshow of Lilike: