The diagnosis

Hypoxic (lack of oxygen)

Ischemic  (restricting blood flow)

Encephalopathy (affecting the brain)

Also known as HIE. This is what the doctors told us they believed Charlie to have, likely as a result of some sort of asphyxia during his birth.

I don’t think I’ve cried so hard since my mother died. I couldn’t stop. I couldn’t breathe. I can’t. The pain is too much.

It’s like some horrible dream or movie. This isn’t my life. This can’t be happening.

A team of doctors and social workers have taken us into a private room, and explain to us that Charlie’s X-ray, ultrasound, blood, urine, and spinal fluid cultures all came back as normal.

His MRI scan shows significant bilateral (both sides) damage to his brain. The MRI results (and resulting seizures) are likely the result of asphyxia (oxygen deprivation) around or during birth.

While the neurology team has given us a diagnosis of HIE, Charles’ doctor wasn’t 100% convinced, given that all of his other tests came back normal. We’re told that in cases of HIE, other tests will show correlation to the MRI (such as heart/kidney damage). This did not happen in Charles’ case.

There is an infinitesimal possibility that he could have some rare disease or infection, but it’s not likely.

We’re told to expect significant physical and cognitive delays. That we’re most likely going home with Charlie in some sort of assisted living facility. We’re told that only time is going to tell us what/if there are any deficits.

The doctor explains that there are three grades of HIE, with 1 being mild and 3 being the most severe. Because of his seizures, Charles is automatically placed into grade 2. This grade has the most uncertain and unforeseeable prognosis.  

There are a million questions swirling in our minds. I immediately begin to blame myself. Was this because I chose to have a VBAC? Was this because we chose to have a home birth? Shouldn’t the midwives have known something was wrong? Shouldn’t I have known something was wrong? What are we going to do? What about D? What about Charles?

The doctor, for his part, told us this could have happened in home or hospital.  He insisted I not blame myself; that this is just ‘one of those things’ that happens. (It’s estimated HIE occurs in 1-4/1000 births).

He also said this was in no way related to our decision to have a VBAC. HIE is a complication of vaginal birth, not exclusive to those attempting vaginal birth after cesarian section. (For some perspective, my chance of having a uterine rupture during labour [which is the major scare around VBAC] was 7/1000, while the chance of Charles developing HIE during my VBAC attempt was 0.4/1000). Talk about winning the lottery.

The doctor says the next few days will be crucial for Charlie. His target milestones are waking up and doing ‘baby things’ as the medications are eased off, and taking oral feeds. I try not to cry when I look at him, but I can’t help myself. Parents are supposed to protect their children, and I’ve already failed him.

We were told that 75-80% of babies with HIE survive.

75-80%.

Our boy was already a miracle.

Of those who survive, 50-70% will develop seizures, and 30-40% will go on to have some sort of developmental disability. There are no factors that really can predict outcome. As the doctor told us, “It’s really up to Charles now how well he is or isn’t going to do.”

None of that matters, because right now, right here, in this moment, Charlie is our son. He’s our son and he is love. So loved. So wanted. So cherished. And he is going to have the best shot that we can give him. Our hearts are heavy but we are filled with hope.

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One thought on “The diagnosis

  1. Pingback: Charlie W. – Muskoka Bear Wear

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