Tuesday, February 14, 2006


So is it just me??? Why, when I read the following piece of research by Saigal, do I see another "all-better-by-the-age-of-two" appearing?? Only this time the goal posts have moved, and it's now adulthood.

There are too many questions and not enough answers in this research, for example, what do they consider independant living??? How much support is needed, to make that living independant??? If it's with support, is it ever truly independant??
Is living in a care home, consider independant living?? Is attending Day Care classed as continuing education??

Many children with disabilities walk away from school with 'qualifications', but they won't be on the same level as you or I have. Any qualifications they may gain, will not equip them for a job where they demand A & O' levels. There are so many career paths out there that just are not available to people with disabilities, too many predjudices and too many people willing to take advantage of those less fortunate than themselves.

I know deep down that my son will never live independantly, not without a huge amount of support. That may be independant from me, but it isn't truly independant, as most of us would see it.

ELBW babies/adults, what gestations are we talking about here?? How many of these ELBW babies are the micro-preemies that they are able to save today, babies who in reality are far more fragile than a lot of the babies they were saving 20 years ago.

To me there are so many things within this research that may bring false hope to parents of premature infants. Too many questions that need answering before I start jumping up and down.

It's only when questioned deeper that you realise this research is not as positive as it would first seem. For those of us with preemies with disabilities as a result of their premature birth, they are not going to awake on the morning of their 21st birthday and find they have "recovered"
just as we didn't on their second.


Saigals Research

Traditionally, educational attainment, getting a job, living independently,
getting married, and parenthood have been considered as markers of successful transition
to adulthood.

To describe and compare the achievement and the age at attainment of
the above markers between extremely low-birth-weight (ELBW) and normal birthweight
(NBW) young adults.

Design, Setting, and Participants
A prospective, longitudinal, population-based study in central-west Ontario, Canada, of 166 ELBW participants who weighed 501 to 1000 g at birth (1977-1982) and 145 sociodemographically comparable NBW participants assessed at young adulthood (22-25 years).

Interviewers masked to participant status administered validated questionnaires via face-to-face interviews between January 1, 2002, and April 30, 2004.

Main Outcome
Measures Markers of successful transition to adulthood, including
educational attainment, student and/or worker role, independent living, getting married, and parenthood.

At young adulthood, 149 (90%) of 166 ELBW participants and 133 (92%)
of 145 NBW participants completed the assessments at mean (SD) age of 23.3 (1.2)
years and 23.6 (1.1) years, respectively.

We included participants with neurosensory impairments (ELBW vs NBW: 40 [27%] vs 3 [2%]) and 7 proxy respondents. The proportion who graduated from high school was similar (82% vs 87%, P=.21). Overall, no statistically significant differences were observed in the education achieved to date.

A substantial proportion of both groups were still pursuing postsecondary education
(47 [32%] vs 44 [33%]).

No significant differences were observed in employment/school status; 71 (48%) ELBW vs 76 (57%) NBW young adults were permanently employed

In a subanalysis, a higher proportion of ELBW young adults were neither
employed nor in school (39 [26%] vs 20 [15%], P=.02 by Holm’s correction); these differences did not persist when participants with disabilities were excluded.

No significant differences were found in the proportion living independently (63 [42%]
vs 70 [53%], P=.19), married/cohabitating (34 [23%] vs 33 [25%], P=.69), or who
were parents (16 [11%] vs 19 [14%], P=.36).

The age at attainment of the above markers was similar for both cohorts.

Our study results indicate that a significant majority of former ELBW infants have overcome their earlier difficulties to become functional young adults.

JAMA. 2006;295:667-675 www.jama.com

Sunday, February 12, 2006

I have been sick

I've not posted for a few days because I have spent most of them sleeping! There seems to be some kind of virus going around that I really thought we had managed to escape, that the flu vaccines had protected us from it.

Boy was I wrong.........I have slept pretty much solidly since Friday, I am awake now, but my entire body hurts.

So it is now half term, the children have a week off from school, be interesting to see if they come down with it during the holidays or as they are all due to go back to school.

We are supposed to be going to Grandma-with-the-white-hair's house tomorrow!! Let's hope we're all well enought to go, cos I know one little boy who is going to be very unhappy if we can't go!

Thursday, February 09, 2006

medical bits

I spoke to Michael's Paed today it appears that she isn't able to refer to the hospital we would like to take him too either. In order for us to get a referral there, we have to go to the ENT at our local hospital, who then have to request a tertiary(?) referral, to that hospital, because it's something that they can't deal with. Which given his swallow issues there is every possibility that it could be more than just adenoids, and his Paed wants everything ruling out first, which our local ENT won't be able to do............are you with me on this??

Basically this means waiting x number of months for an appointment with ENT here,
to then be told we can't do this, we will refer to Y,
so then we wait x number of months for an appointment there,
When we could have all been saved a load of hassle, by being referred to Y in the first place.

Can someone please tell me where the best interests of the patient comes into this game??

Monday, February 06, 2006

Please don't ask

what I'm doing here at 1am.

I've been to bed, and as soon as I laid down my head filled with all these things I suddenly needed to think about, like Mic-Key buttons that may or may not be too small.

I'm sitting here with Hot Chocolate, thinking I need to go back to bed, I know I have to get up soon, because children need to go to school!!! But as soon as I lay down my head fills with all this useless information and my brain is running!

Sunday, February 05, 2006


I'm not sure if I've mentioned this before on here, I think I may have done.....

Michael developed a stutter/stammer which was around for a little while and then seemed to vanish almost as quickly as it appeared. We were put in touch with the "stutter" Speech and Language Therapist, who sent us some information on stuttering, and I have to admit we never went to see her, because the problem seemed to have cleared itself up.

Well, the Stutter is back, and back with a vengence. I have to say it's actually been quite painful listening to Michael trying to make himself understood. So tomorrow I will be ringing the SALT to see if we can meet to discuss this.

If your interested in seeing what I mean, then click here

Thursday, February 02, 2006

Night Time

We managed to get hold of the SAT's monitor from the hospital in order to do some overnight readings on Michael. My main concern was what if any affect the snoring is having on his sleep.

I have to confess to being really confused now, the first night we did, when I put Michael onto the SAT's monitor he was sitting at 89% and the desire to put him into 02 there and then was immense, but I restrained myself thinking we needed a clear picture of just what was going on.

He did not have a good night, when I printed it off Tuesday morning his average was 90% with 20% of the night sat's in the 70's and 80's.

So we tried again Tuesday night, I sat watching him for a while, just to see what was happening with his numbers...he was sitting quite happily at 95% which was wonderful, and then he started dropping his numbers, finally settling on 82% before he picked himself back up to 95% He did this half a dozen times before picking himself up and sitting at 95%.

When I printed it off Wednesday he had an average of 95%, with a small percentage down into the 80's.

So we did it again last night, just to see, again when he went on the machine, he wasn't snoring and his sat's were sitting at 95% and this morning that was his average, with a small percentage of drops into the 80's.

So, now I am totally confused, was Monday just a bad night???? But what about the dips in his SAT's into the 80's on Tuesday and Wednesday night.....is this normal?? Do we all do this normally as part of our sleep pattern??

But going on Tuesday and Wednesday nights readings maybe his snoring isn't affecting his sleep that much, but then why does he look so tired right now, and why am I having to peel him from between his sheets in the mornings??

Confused.......?? Me too???

Wednesday, February 01, 2006


ROP or Retinopathy of Prematurity is a condition that premature babies develop in NICU's around the world.

What is retinopathy of prematurity?

Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.

Michael had Grade 111, ROP, and narrowly avoided lazer treatment for it, however this morning a letter dropped through the door asking if we would take part in some research on the affects of ROP in Premature infants.

As you can imagine we have said yes!