Thursday, April 8, 2010

A Sword of Sorrow Pierced My Heart

Let's just say that I was becoming all too familiar with the route to Rush University Medical Center. I had travelled this path many times in a short period of time and at this point, I could almost do it on auto-pilot. My mom and I partook mostly in mindless chatter during the 1 1/2 hour journey, but she didn't succeed in calming my nerves.

After waiting for a good 30 minutes, we were called to the room where they were holding our private conference. We were introduced to a room full of people. There were three nurse practitioners, one social worker, a physician liaison, the neuro-radiologist who read our MRI scans, a neurologist to help with interpretation, and the hospital chaplain. I was told that the neonatologist would be in a while later to discuss the role he or she would play.

We learned through this consultation that Caleb has 2 different issues with his brain development. He does, in fact, have a significant cyst in the center of his brain. The cyst in and of itself does not appear to be a problem as there is no blood flowing into it. It isn't growing or threatening, it just simply is present. The problem, however, is that it is present in place of another part of the brain. Caleb is missing a part of his brain called the corpus callosum. According to the neurologist, there is no way to fix it and there is no chance of it developing now. What is done is done.

The other major issue with Caleb's brain is the there is severe deformity in the left frontal lobe. The brain is made up of tissue and the entire left frontal lobe has a mass of tissue called a heterotopia. This is really just a mass of excess tissue that shouldn't be there, and as a result, it has overtaken the healthy cells and brain tissue on the left side of the brain. There are no other parts of the brain that are missing; just this mass that is preventing proper growth and function of the left side of the brain. The doctors couldn't say why this had happened, they could only promise that there was no way it will repair itself or go just is the way it is.

Unfortunately, the doctors couldn't give us a guaranteed outcome of what these abnormalities mean for Caleb, but according to similar cases they have seen in the past, they were able to give us the following prognosis: Caleb most likely will have severe difficulty with speech and he may never be able to talk. He may also have issues with hearing and sight. The left frontal lobe controls the right side of the body so he may be paralyzed on his right side or have problems controlling that half of his body. He most likely will never walk. Because the left frontal lobe and corpus callosum both participate in cognitive skills and intelligence, Caleb is not expected to be able to reason or be capable of higher-order intelligence.

The most serious issue is that the absence of the corpus callosum and the presence of the heterotopia will most certainly cause Caleb to have a seizure disorder. The neurologist pretty much guaranteed us that this is absolutely going to happen. He is concerned that Caleb will not only have seizures, but because of the significance of the abnormalities, he may have uncontrollable seizures and a lot of them. These types of seizures do not respond well to medication and can ultimately cause damage to the healthy half of the brain.

We were told that in the future, we will be having another consultation with a neurosurgeon and a neonatologist. If the seizures are extreme and don't respond to treatment, the neurosurgeon most likely will want to remove some of the mass on the left side of the brain. This surgery, if it happens, would most likely be performed within the first days of Caleb's life and potentially may decrease the frequency/severity of his seizures, but it does not have a 100% success rate. He would spend months in the hospital following the surgery.

I cannot say how difficult this news was for me to swallow. I only know that unless you are a parent who has received news similar to this, there is no way you could even begin to imagine (nor would you want to imagine) how devastating it is for a parent to discover that her child would live with challenges like these. As of that day, I could honestly say that I finally knew what it felt like to truly suffer from a broken heart.


  1. Heather - First off, I'd like you to know that we are praying for all of you right now. I absolutely can't begin to understand what you're going through, but hope that our support and prayers can offer some sort of peace to your family right now. I will continue to pray for a miracle, as I haven't given up on them or God. And no matter what, Caleb will be and is very, very loved by many people already, and we will all continue to hold him up with our love and prayers. Let us know if you need anything...

  2. OH - and you shoudl start a CaringBridge page for him too if you get the chance - I'm sure you can find lots of support and others going thru what you are right now.