Hellobee

“If I can’t find the cure, I’ll fix you with my love No matter what you know, I’ll fix you with my love”

I’m concerned as I can’t locate a part of your baby’s brain…

There is probably no correct response for parents when hearing words like this come out of a doctor’s mouth about your unborn baby. But it’s safe to say that both Mr Chocolate and I froze, eyes staring at the flickering black and white image of our little baby happily tumbling and swirling around inside of me without a pause. Here we were, veteran parents of three healthy “normal” children at a routine anatomy scan, one that I had convinced Mr Chocolate to come to since this would be the last time ever for us in this stage, expecting the exact same experience as we had all those previous times: a quick peek, a few checks, a photo printed out and reminders of when to come in next. That’s what was supposed to happen. That’s what has always happened. Now all of that was gone.

As the shock dragged on, someone — one of us I assume — finally said it out loud.

“Our baby is missing part of his brain? How could a baby be living without a part of their  brain? What part of a brain can even be missing and still allow for that dancing little bean we see on the screen right now? How can any of this be real?”

And thus began a crash course on the human brain, one that started in that sonogram room that extended into endless google searches, finding organizations and groups, and talking to other parents who are all facing the same diagnosis we were now looking at: agenesis of the corpus callosum.

The corpus callosum is often described as the information superhighway of the brain. It’s the bridge and connection between the left and right hemisphere, and how information from one side of your brain is able to travel to the other hemisphere. It’s what allows the two halves to communicate and talk with each other. Agenesis of the corpus callosum falls into a branch of disorders all surrounding the corpus callosum. Agenesis (ACC) means missing, as in there is no structure connecting the two brain halves. Another condition, PCC, means there is a partial corpus callosum structure, while DCC means there is a damaged corpus callosum present. In the case of ACC, it means an absence of the structure entirely.

Surprisingly in this upside down world, having ACC tends to be the best diagnosis of the three disorders. Without a bridge to communicate, the brain forces itself to find new pathways across the gaps. The metaphor is likened to the idea of side roads when a main road is closed. Because there is no option to cross the missing bridge, the brain works out side paths similarly to when stroke victims lose use of half of their bodies and the brain creates new ways to communicate to allow them to regain use. PCC and DCC both have the road, though it is incomplete or damaged, but it is thought because some path is still available, the brain will push forward with its use instead of trying to divert to the side roads.

Our wonderful doctor tried to break this down as best as she could, as Mr Chocolate and I stared blankly at her trying to comprehend what any of it meant. I even remember saying out loud, “How can a person whose left and right hemisphere can’t talk to each other even walk? How will the brain know to stick another foot forward if it doesn’t realize the other side has moved already?”

After a short time of talking in circles because I think I managed to ask the same questions over and over, Mr Chocolate grabbed my hand to wake me out of it, and the doctor laid out some paths forward for us.

ACC is a rare disorder, but surprisingly one that is completely livable with and one that ranges vastly in expectations. The technology to discover corpus callosum disorders has advanced significantly even since the time I had Drake. More and more babies are being spotted in utero with these issues. The percentage of people with this disorder is probably higher than we realize because there are adults who have this condition but never even knew until they need an MRI later in life, and are discovered to have a missing or partial one. For many cases ACC is an isolated anomaly. It’s unknown why this particular piece of the bran fails to develop (typically in the 14-18 week range I believe) and other times it is linked to a genetic disorder which can also lead to more problems in development and life depending on the disorder.

Our doctor’s first order of business was to figure out which one of these was the cause — an isolated issue or a genetic disorder. Her recommendation was an amniocentesis as soon as possible to help us figure out in truth how we would like to proceed. It was unfortunate our anatomy scan was done on a Friday, so the soonest we could get an amniocentesis appointment made was the following Monday.

That was the longest weekend of our lives. Between the two of u,s Mr Chocolate and I cried, googled, tried to keep a brave face in front of our other children, cried more, talked about the what ifs, dove deep into google rabbit holes, etc. Luckily for me in one of my dives I discovered a mutual acquaintance (the parent of one of Juliet’s classmates I was friendly with) whose niece happened to have PCC. After connecting with her I was able to speak to her sister-in-law about her 12-year-old daughter and learn firsthand what life is like parenting a child with a corpus callosum disorder. She was a wealth of information and directed me to the National Organization for Disorders of the Corpus Callosum (NODCC), as well as numerous Facebook groups where I could see parents at all stages of  diagnosis parenting children with this special disorder, and even adults with their newly discovered diagnosis. Seeing all these amazing children growing, flourishing, and thriving showed me how resilient and amazing the human brain truly is and how much more capable it is than we know.

Armed with some newfound hope, Mr Chocolate and I walked into the hospital on Monday for our amniocentesis. After speaking to a genetic counselor and figuring out what tests we wanted the amniocentesis to be sent out for (cross checked with all the previous scans and blood tests I had already done for the pregnancy including NIPT, NT, AFP, etc. which all came back low risk or normal) we settled on a micro array of the genes to check for duplication, deletions, and any other chromosomal issues that might have a genetic disorder linked to it. I won’t say the amniocentesis was fun — I was stressed and nervous about possible complications, as well as just being a ball of emotions and anxiety for the past 72 hours beforehand, but the doctor was careful and gentle and kind in her bedside manner. We were able to see our little one bounce around and play on the sonogram and move right into the spot the doctor had wanted to insert, so we had to wait some more watching baby dance around until another spot was found. The doctor said sometimes babies get curious about the insert needle and will reach out and play with them, and sure enough our little one moved over immediately and started to touch and hit into the needle which felt very strange, but also calming in some sense to see the interaction happening as well.

Afterwards we headed home for 48 hours of bed rest (which turned out to only be 24 hours as the next day it was discovered Juliet had lice which helped a week pass quickly as I picked, washed, and brushed hair out ad naseum). The micro array results can take up to 2-3 weeks we were told so for now we wait. The next steps to be taken are a fetal echo to check on the developing heart, an appointment with a pediatric genomist after the micro array results return, and a possible fetal MRI down the road, as well as other tests and doctor appointments that might pop up as we navigate these strange new waters. It’s going to be a long journey, but one I hope will conclude happily for us all.

“And if you say you’re okay I’m gonna heal you anyway Promise I’ll always be there Promise I’ll be the cure”