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For a week I feel like I’ve been holding my breath, too afraid to do anything but gasp a few mouthfuls of air as the anxiety of what could be coming squeezed around my lungs like a fist. Then, yesterday it was like someone slammed me against the wall and every bit of air came rushing out in one long wrenching sob. The results from our fetal MRI came back and I’m blown away.
An Absolute Nightmare
Today I feel shell-shocked. All at once emotional and detached. How can all of this be happening? Why is it happening to us? What have I done?
The truth and reality is I’ve done nothing. Nothing to warrant this nightmare we are living. All I wanted was to start a family. No parent should ever have to go through this. No woman should ever have the joy of pregnancy ripped from their fingers as, one by one, the doctors faces grow somber and they gently pat my hand. They talk softly of all the horrors that await my unborn child, if he even survives birth. The doctors mean well, and they are compassionate. I know the doctors don’t relish giving me bad news, but that doesn’t stop them.
Yesterday was the appointment I’d been dreading for so long. We met with a neurosurgeon at Nemours Hospital to go over the results of the fetal MRI scan that was done several weeks prior. I’ve never sat and watched so many people waiting for me to react, to cry, to break down. Why? Because the news the hubs and I heard was enough to make anyone cry, scream, or even throw things. Instead I listened, I absorbed, I asked questions, and I carried it all with as much grace as I could muster.
News No Pregnant Momma Ever Wants to Hear
You see, on top of a heart defect that will need surgery during his infancy, my little tiny Christian also has a brain malformation. He’s had excess fluid on his brain for months. His head size is several weeks larger than it should be. All of this is information we have learned from routine ultrasounds. But what we learned from the MRI images was even more disheartening. Our baby boy’s cerebellum is extremely undersized, as is his brain stem. What does that mean? At this point he has a high probability of learning disabilities, motor control delays and deficiencies. The cerebellum and brain stem control movement, emotion, and the central nervous system. All of those things can be affected by the underdevelopment. But that wasn’t all.
The doctors believe that the MRI shows an issue with his eyes. One appears significantly smaller than the other, a condition called micropthalmia. Micropthalmia ranges in severity of vision problems, sometimes leading to blindness. The underdevelopment of the brain and the micropthalmia lead the medical professionals at Nemours to believe that my baby, my precious little son, has a syndrome called Walker-Warburg. Walker-Warburg Syndrome is lethal. Plain and simple. The average life expectancy is less than three years. And those three years are filled with surgeries, a brain shunt, feeding tubes, breathing apparatuses, etc. All while watching a precious child waste away with a severe form of congenital muscular dystrophy. To learn more about this horrifying disease, read the facts page here.
Perhaps the worst part is not knowing how to feel. No one can tell you the right course of action. Nobody can tell you or even help you with what you should be feeling. Defiance? Like my baby will beat all the odds? Sorrow and despair? For a life that will never be comfortable, easy, or long? Joy? That this baby’s heart still beats and that his powerful kicks keep me awake at night? Anger? For being robbed of something I’ve wanted for so long? Or hope? For a miracle and something to be better than it seems?
It’s nearly impossible to have any semblance of stability right now when every time I think we’ve had the worst and I can shoulder the burden, my feet are completely knocked out from under me. I feel as though I’m on a boat that could capsize at any moment. And nothing will ever be ok again. I know I’m not the first parent to go through this, and I certainly won’t be the last. However, I’ve never felt so isolated and so alone even amidst all of my life’s trials. I can’t imagine what the days ahead will bring and I am terrified. Yet I try to be hopeful that things will be different, better.
I feel so incredibly helpless. I haven’t been able to protect my son from a crippling diagnosis. As his mother, I feel an immense amount of guilt at not being able to serve that most basic of instincts. I can’t protect him from two very probable major surgeries on the most delicate organs in the human body. How do I cope with that? My precious son will have his life in the hands of surgeons and nurses on an operating table. And then he’ll be in the NICU, away from me and his daddy. On breathing and feeding tubes. My little boy. The child I will carry for nine months, that I’ve been doing everything in my power to keep safe. I am at a loss.
The two best things to come out of yesterday’s appointments are this: we’ve met and dealt with some incredibly kind doctors, AND the maternal fetal specialist gave me hope. For the first time in many months. Our baby boy’s body is perfect; except his tiny heart and brain. And he did not confirm or deny the Walker-Warburg syndrome diagnosis. He also mentioned Dandy-Walker syndrome, which may not prove to be lethal. Though neither diagnosis will be certain until after his birth in two month’s time.
It’s all just so much to process. And so hard. The fact that I may not see my son for so long and may not be able to bring him home for the holidays – it’s just too much to bear right now.
I am so tired and worn. And it is really just the beginning. When will it end?
Is all this worry and stress for naught? When will we be able to be a whole family? When can I have a “normal” life again? Or do I have an even darker path ahead? I don’t know, and not knowing makes it so much worse.