Saturday, September 08, 2007

The Developmental Report

RE: McCarthy, Alfie Peter
Unit Number: P0044hosp7
Date of Birth: 29/06/06
HCN: 02834948372
Location Code: Dev
Seen in Clinic: 25/07/07

Alfie and his mother were seen in the Developmental Clinic in followup today. Alfie is now 12 - 1/2 months old and was last seen in May 2007. As you know, he is a little boy with Trisomy 21 and congenital CMV infection. At the time of his original consultation in May, Alfie was unwell and we were unable to complete a developmental assessment.

But now we have done it and are sending this copy to his parents. It will be interesting for them to read this 12 page report about their son and useful for them to have a copy of the information that is used to assess his development. But in addition to this, it will feel a little bit demoralising. They will read through a description of their son that concentrates on all that is 'wrong' with him, from his head, to his toes. Alfie's mother will process this by re-writing the report so that it more accurately describes her son.

On examination of head and neck, Alfie was noted to have a large anterior fontanelle with a relatively flattened occiput. He has his mother's eyes and a little button nose. Examination of the extremities revealed short, broad hands, again like his mothers. There is a gap present between his first and second toes on both feet. On neurologic examination, no facial asymmetry was present and he is undoubtably an extremely handsome child.

All the achievements of which his mother and father are so proud will now be dismissed in short sentences that compare him to a large number of children who do not have Down syndrome, and for all we know, might have nothing special about them at all. On the gross motor subscale Alfie had an equivalent age of 7 to 8 months. On the Self-Help Subscale, Alfie had an age equivalent of 9 months. His cuteness factor was 140% and by parental report his happiness level is equivalent to that of a child who has been born into a loving home and adored, from the very start, by all who have ever met him. His mother and father are, quite rightly, extremely proud and contended to have produced such a unique and charming son. Together with Alfie's older brother Noah, they appear to be a perfect family.

A Doctor, confined within the traditions of a medical model of diagnosis, who has to write these reports for her job, MD FRCPC

c - my blog


Jodi said...

This is a good post! I can so relate

Anonymous said...

That was great Alice! Thank you for writing this as I should be getting Eric's report in the mail soon and need to be prepared for what they say.

Our little guys are so wonderful! They should concentrate on how WELL they are doing, not what they are behind in! Blah!

Felecia :)

Nicole said...

That should be sent back in! This is so true, and enlightening and doctors need to hear it. Thank you!

Penny L. Richards said...

I'm with Nicole, return it to the original author with your editorial changes highlighted. Especially if they're new in their work, they might have a chance to learn and change.

Anonymous said...


And while you're at it, give him a few new diagnoses. My own son has CP, CVI, GERD and QTpi syndrome, the last a very severe, congenital, and likely hereditary case, as all of his brothers have varying degrees of cuteness too.

I can't wait to see what you can do with rewrites of IEPs ; )

Rachel, mom of boys

jotcr2 said...

Cool post.

Charmaine said...

Wow, you need to send that back in to the doctor. Totally!

Alice said...

Yes but I'm actually being a bit churlish I think. I really like the doctor and I'm keen to get the support and medical attention for Alfie - it can help to flag up the things that can be treated. The real trouble is that there aren't any treatments available for most of the things she's described - for example intensive intervention is only available for children with autism, not Down syndrome - so it turns this exercise into a bit of a meaningless list of 'problems' with no real solutions. Also, she's described lots of things that are physical features and traits that I think could just be summed up with the two words 'Down syndrome'. Why so much detail about toes and noses? I'm obviously still conflicted about this. I think I'm just going to file it away under 'ignore unless it becomes useful to you'.

Amy said...


Anonymous said...

I received Eric's in the mail last week. One sentence was "Eric has a large tongue". I think that was the one I hated the most LOL. Blah! Thank goodness for the head's up! Thanks Alice!

Felecia :)

Anonymous said...

I agree. Perfect!