The Vista Summary

For those trying to keep up with the latest progress/diagnosis/prognosis of Vista here’s a short (OK, not so short, but when is anything I ever say short?) update.

If you’re not interested in the whole mommy/kid/doctor/diagnosis type thing then move along, this is not the post you’re looking for.

Background

Vista was born 4 weeks early and spent a week and a half under UV lights for jaundice, due to a ABO blood incompatibility between her and I. She also had an infection for which she was on IV antibiotics. Otherwise, she was a very healthy baby.

In The Beginning

We first started noticing issues when Vista was about 3 months old. She wasn’t as flexible as most babies (she couldn’t bring her feet up to her mouth to chew on, for example. Which, quite frankly, I was OK with, because really? Eeeewwww. Feet. Even if they are baby feet, which are all cute and everything, but still…chewing on your feet?). Then we noticed she couldn’t sit up like other babies, and she wasn’t babbling either.

Around this time she also became a colicky baby. If you’ve never had a colicky baby, count yourself lucky. I can remember telling my husband one day “I understand, now, how shaken baby syndrome happens. I don’t condone it, I would never do it, and it should never happen, but I understand now how a parent on the edge already could reach the breaking point so quickly when you’re with a child who cries 24/7″. There were a few times where I had to lay her, still crying, in her bed, and step outside for a few minutes to regain my sanity. But I digress… She was colicky, which was eventually diagnosed as reflux. This coupled with an eventually discovered milk allergy made for lots of fun the first year.

By a year old, though, we were starting to see more developmental delays. She still wasn’t crawling or even really rolling over much, so we managed, through our Public Health Services, to get a referral to the Early Intervention (EI) group. We now have our own EI child development specialist, physiotherapist, occupational therapist, and speech pathologist that work with Vista a couple times a month to keep her caught up on her milestones.

But we still felt there was something more going on. This was confirmed when she started having mild seizures. Her pediatrician sent to referrals to the neurology department at the local Children’s Hospital. They refused to see her both times. So we finally convinced her pediatrician to request an MRI, himself, after an EEG came back normal.

MRI Results

smiles 300x213 The Vista SummaryEven though we were expecting the MRI to show something that would explain the delays, nothing prepared us for the words “There was abnormal results on the MRI”. The next half hour passed by in a blur as we tried to take in and understand the flurry of medical terms that were being thrown at us.

“…brain malformation…”
“…absent septum pellucidum…”
“…thinning corpus callosum…”
“…hydrocephalus…”

Wait! Hold the boat! Did you just say my daughter is missing part of her brain?!?

I looked over to where Vista was sitting reading a book with Bil in the doctor’s office. She looks normal. How could this beautiful little girl be missing something in her brain. I couldn’t comprehend it.

We still don’t really know, at this point, what the ramifications of these issues are or will be. We’ve been referred to a neurologist (again) and hopefully will have more answers once we meet with him. The tricky thing about a missing septum pellucidum is it’s never the only issue and it doesn’t cause the issues you see in a child. Most cases of people where their septum pellucidum is missing, also have a malformed optic nerve that also causes blindness or other visual issues. But we’re not seeing that with Vista. So, at this point, we suspect that her delays, reflux, constipation, and seizures may be due to the thinned out corpus callosum. But all that’s just conjecture until we talk with the neurologist.

In the mean time, we’ve also consulted with a geneticist. They are running a bunch of tests to see if they can pinpoint the cause of the delays from a genetic syndrome point of view. So, they’re hoping to rule out Fragile X, Triple X, and other things like that. Or rule them in, as the case may be. At any rate, we won’t have results for a while…up to three months.

That’s OK. We’re really good at waiting these days. Vista’s almost two. We’ve spent almost two years fighting the system to prove that we’re not just neurotic parents and that there was something really wrong with our daughter. Three more months? Yeah, we can deal with that. At least, now, things are being done, and doctors are listening to us. And more importantly, we’re able to get Vista the help she needs to be as normal as possible.

Some things we’ve learned over the past two years:

  • Parents know best. If you feel there’s something wrong with your child there usually is.
  • The only person who’s going to advocate for your child is you
  • Don’t be afraid to question the doctors and ask for clarification.
  • If you’re not comfortable with the ‘wait and see’ approach the doctor is taking, say so. Ask for different tests, more tests. Quite often they won’t suggest it.
  • Don’t back down. When you’re told you’re just a neurotic parent, that your child is fine, that you’re putting them through tests for nothing. If you truly believe something is wrong, pursue it.

The part that really scares me about this whole thing is, how many kids go undiagnosed? How many parents, when told they’re just hyper-vigilant, back down and just accept that. I suspect more than fight to have their child diagnosed. If we hadn’t fought, we would have probably never found out about her brain condition and we’d just have a child who was labeled as ‘slow’.

Makes you have a lot of faith in the medical system.

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