MRI evaluation

Nathan had his MRI evaluated by the Carter Centers for Research in Holoprosencephaly back in 2006. However, since he still had massive fluid build up in the brain, the data wasn’t completely accurate. Back in mid 2009 he had another MRI and I finally got the results today of the new MRI interpretation by the Carter Centers. Here are the results (click on the image to see a larger version of the document in Picasa):

From Random
From Random
From Random

(it was a PDF so I took screen shots of the PFD so I could display it here, so make sure you read it correctly)

Of interest:

* I was hoping that after 2.5 years of decompression, the results would be more favorable. Unfortunately, he is still classified as having severe semi-lobar holoprosencephaly.

* After his initial MRI evaluation, we thought he had NO corpus callosum. It turns out he does have a little bit of corpus callosum in the back of the brain! It’s very thin and only in the back – but some is better than none! This is GREAT news!

* In the original report, found HERE, it was reported that Nathan’s basal ganglia was completely fused. In this latest report, the fusion is a little bit less severe – classified as a 1 instead of a 2 (2 means complete fusion, 0 is no fusion). This gives us more hope for motor development.

* There’s less fusion than we thought in the back of the brain. Initially the separation of the brain looked we can see more separation in the back, but the front is completely fused and the middle is mostly fused.

* The cortex is slightly malformed, which wasn’t apparent in the initial scans.

So what’s the significance of all of this?

I called Nancy Clegg of the Carter Centers to review the findings and we talked for a very long time regarding the results as well as many other questions that I had.

She answered a significant question that I’ve been having. I have been feeling really awful, wondering what it is that I’ve done wrong that, even with all of the therapies Nathan’s had, he’s made so little progress. The only answer I could come up with was to blame myself for my lack of consistency. This was really weighing on me.

However, Nancy explained that at the Carter Centers and at Texas Scottish Rite where she works, they follow literally hundreds of kids with holoprosencephaly, and hundreds of kids with “straight” Cerebral Palsy. She told me it is important to make this distinction – there is a major difference between kids with CP and kids with HPE. She explained that the main difference is kids with CP suffered an insult to the brain AFTER having had an intact brain (even if this was only during gestation and the injury happens at birth). Kids with HPE NEVER had an intact brain – as this malformation ocurrs at 5 weeks gestation. Once a person has an intact brain and receives an injury, the cells have a “memory” of how the brain functioned before the injury, so it’s easier to restore function. She said that she sees great progress with most of her regular CP kids who have suffered “insults” either at or after birth.

The HPE kids, however, she rarely sees major progress. The kids that have semi and alobar HPE tend to make very little progress regardless of the interventions they receive. She told me that she doesn’t see much difference between the HPE kids that have received a LOT Of interventions, like Nathan, and kids that have just received minimal/maintenance intervention.

For some reason, fusion in the brain is very devastating and the brain can’t seem to find a way to compensate for this. They’ve seen cases where a child has had an entire hemisphere of the brain removed and the child eventually gains almost normal function. But with the HPE kids, this just doesn’t happen because the fusion seems to affect the brain much more severely.

Now I do NOT agree with her that interventions don’t make a difference – I have seen with my own eyes changes and improvements in Nathan. Perhaps we haven’t made great progress with Nathan’s motor control because that is his most impacted area. But everything we have done has given him other abilities – mainly cognitive – that he wouldn’t have gained otherwise.

Cognitively, Nathan is AMAZING considering the severity of the malformation. She was VERY surprised at some of the things that I told her Nathan can do and understands. For me this was reaffirmed in the afternoon when I saw Nathan breeze through his dynavox and tell us what he wanted to play with and what his favorite movies are. Even just 1 year ago he had greater difficulty with the Dynavox. So he IS learning and he IS making progress thanks to all of the therapies we’ve done with him.

BUT at least I did feel a bit better knowing that it’s not my fault that Nathan hasn’t made greater progress physically. She reiterated how impacted his “motor” area (the basal ganglia) is and how this fusion is a tremendous, almost insurmountable challenge.

I guess this is really significant for me because some months ago I had decided that diagnosis makes NO difference at all. You can read about my epiphany in the”What’s in a Diagnosis” post. My conversation with Nancy today helped me adjust my expectations. The diagnosis DOES have an impact – Nancy sees this at her clinic day in and day out, and she can say with 100% certainty that kids with HPE are very different from all of the other kids. So her words helped me adjust my expectations. I still believe Nathan CAN learn and Nathan’s brain IS plastic and malleable and has the potential for growth. But at least I can be realistic and know that the HPE makes a major difference in his ability to gain motor control. And this results in less pressure and stress for me – I don’t have to feel like I am failing him all of the time.

We talked about many other things (it was a long conversation), and it was helpful to hear her take on things as she deals with so many kids and families that have Nathan’s exact diagnosis. I mostly talk to families of kids with cerebral palsy and the truth is that the pathology is different, like Nancy explained. And even though I rejoice in the progress that all of other children make, when I am tired and worn out I feel sad that Nathan hasn’t made greater gains. But now I have a better understanding of why that is.

All of this said…I have great hopes for Nathan. I believe that we have found a fabulous combination of therapies that is working for him. Most of the therapies we are doing now (except ABR) address the brain and helps the brain re-map itself. For example, yesterday Victoria worked on “teaching” his brain what his lower back feels like. Today, she put him in “bridge” pose and he lifted his butt off the table!!!!!!! It was amazing to watch (sorry I was feeding Belle and didn’t catch it on camera). So if he can learn something like that from one day to the next – why can’t he learn more? Of course he can (and he will!!!!).

I don’t regret everything we’ve done for Nathan – I feel absolute peace that we’ve done everything we could. My one regret is about consistency. We’ve done a lot of different things but I never found things that I could wholeheartedly believe in. The first thing that I found that I could wholeheartedly believe in is CME (Cuevas Medek Exercises), but unfortunately this therapy isn’t sustainable for us as there isn’t a therapist on the West Coast.

Now I have other things I am developing tremendous faith in – ABM, ABR, Reflex Integration, HBOT, Rolfing, and G-therapy. Now, since I have strong faith in these programs, I have no doubt that I will be consistent because I can see they are working.

My plan is to “sustain” these therapies for the next several months at the very least and then evaluate again in a few months to see where we are. For now, I feel confident that we are heading in the right direction!


  1. Where there is God there is hope. Where there is Jesus there is healing. Where there are believers, like yourself who are not afraid of hard work, there is success. May God continue to pour out His Healing Power onto Nathan and may he continue to bless you and all those around Nathan with knowledge, faith and the peace that passes all understanding. The Light shines in the darkness. God bless.

  2. This is very interesting. Emma’s brain injury occurred due to the virus contracted very early in my pregnancy – and the brain didn’t form correctly according to her scans. Things are in the wrong place, etc. So, maybe that is one reason we aren’t seeing as much progress with Emma as the other children we see. Her brain just wasn’t fully formed before the insult – the insult happened during brain formation. Thanks for this post.

  3. Good job, mama! agree whole heartedly and I do think there’s a certain amount of peace that comes from knowing you’ve tried all much as you can.

    I’m always suspicious when they say kids with hydrocephalus don’t have a corpus callosum since it is easily masked by the ventricles.

  4. Bridget Balogh says

    Great post! You’re making me want to dig out Jack’s report from the Carter Centers and review it again!

    You (and Nancy) also confirmed what I’ve always thought..a malformed brain is a different animal than an injured brain. We know a child who is Jack’s age and had a hemispherectomy at age 1. He is amazing..he is in typical preschool and runs around all over the place. He still has his challenges, but has made so much progress. I love to see him because he gives me hope.

    All of our kids are fighters and do so much more than the scans would ever suggest! Thanks for the reminder 🙂

  5. timely post… Fletcher is getting his second MRI (first was in 2007 in the NICU) as I type!

    Just got done with our 3+ day VEEG… call me sometime.

    Take care!

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