It was going to be a comeback story for the ages.
Seriously. Even though we had seen ultrasound after ultrasound of the baby’s legs together and not moving, this time was going to be different. MJ warned me not to be optimistic because she didn’t want to see me crushed. But her resignation and morbid acceptance of this baby’s fate was only going to make this tale of redemption that much sweeter for me. After all, we weren’t in Cape Cod anymore. This was a big city Boston hospital. The flip side of the expensive real estate and high cost of living in New England was about to pay off in the form of being 50 miles away from the best hospitals in the entire world.
I tweeted optimistically on the train ride into Boston. As we walked down the long corridor at Brigham & Women’s Hospital I visualized what it would be like in just a few minutes when MJ and I would dance triumphantly out the door. Doctors would applaud, nurses would cry and the rest of the patients would throw flowers at us. After all, Hemingway says “man is not meant for defeat.” And neither was I.
But things didn’t work out that way.
This ultrasound looked the same as the last. The nurse wouldn’t make any definitive statements, but concurred that the legs weren’t separated. Also, there appeared to be “other concerns,” but she wanted to leave those for the doctor. MJ was a rock. She was ready for the news. She spent the last week steeling herself. But I’m a fucking idiot. Even with all the proof in the world slapping me in the face, I STILL held out hope the doctor would see something positive no one else had seen.
But he didn’t.
I don’t have super powers. Far from it actually. But during that final ultrasound I was desperate. I seriously focused on willing that kid’s legs to separate with my mind. There was one moment where the baby was absolutely still and the doctor got a close up of the legs. He held it there for what seemed like an eternity. My knuckles went white as I begged and pleaded in my mind for something. Any movement. Just some hope. Please kid, move those legs.
But he didn’t.
In fact, we learned things are way worse than we anticipated. The baby has Sirenomelia, otherwise known as Mermaid Syndrome. It is an EXTREMELY rare congenital deformity in which the legs are fused together. That is bad enough, but the doctor told us the baby has no kidneys. And no bladder. All due to some vascular abnormality during the third or fourth week.
That makes this a terminal disease and the baby’s health is already fading. There is zero chance of bringing this baby to term and obviously there is no quality of life to expect. In short, Pandora left the box open too long and hope flew the fuck out.
I am devastated. Thankfully MJ has the uncanny (and slightly unnerving) ability to process things at warp speed. She really is on her way past this. But I’m a dweller. A ponderer. And unfortunately we’ve been down this road before. We miscarried twice before Will was born, but earlier in the pregnancy. Now please know I’m not trivializing anyone’s losses. Miscarriage is terrible at any point. But for me, it’s so much worse this time.
I saw this kid’s hands. The complexities of the spine. The beating heart. This baby wasn’t just an amorphous blob or a speck on a grainy black and white ultrasound picture. It was formed with a head, a body, legs, femurs. We’re just about at 15 weeks and this is a goddamn little person who is dying inside my wife. And a piece of me has died with him/her.
I tried so hard to be strong for MJ, but I failed miserably.
After our ultrasound we had to see a genetic counselor. We were sitting in the waiting room when a man, woman and their 9-month-old baby sat down next to us. My heart went into my throat. The baby was so cute. She was like a little pudgy angel. But I took one look at her and my whole world shattered. In that moment she represented my unborn child and everything I was going to miss out on. I felt a panic rising inside me but the harder I tried to avert her gaze, the more intently she stared at me. I pulled out my phone and tried to concentrate on something else as the tears began to fall, and I couldn’t have been happier to hear our name called.
When we left the hospital, MJ wanted lunch. I did not feel up to it, but I wanted to be strong for her. We ended up going to the Cheesecake Factory and I told myself to just get through the meal and maintain some level of normalcy.
But I couldn’t.
I nearly lost my mind when they sat us next to a pregnant woman. I couldn’t make this up if I tried. From there it just got progressively worse. The walls started closing in and everything just started hitting me all at once. By the time we got our food I couldn’t stop shifting and fidgeting around in my seat. Thankfully my wife knows me inside and out and asked for the check while simultaneously sending me outside mid-entree. I barely made it out in the parking lot before I deposited my lunch on the concrete.
And from there I went to anger. Deep reservoirs of unadulterated fucking hate.
You have to realize, Sirenomelia is so rare. I mean c’mon. There’s a 1 in 100,000 chance of having a kid with this syndrome. And I’m the one?? Are you kidding? It’s like the bizarro version of winning the goddamn lottery. After two miscarriages now we’re hit with a 1 in 100,000 trifecta. It’s mind-bogglingly fucked up. And I hate it.
I hate that Will is still kissing MJ’s belly and asking for a sibling. I hate that MJ nurtured this baby and felt it grow inside of her for almost four months only to lose it due to a glitch in Mother Nature’s plan. And I hate the notion of unfulfilled potential, because I can’t think of too much that’s sadder than that.
But most of all, I hate that it hasn’t fully sunk in for me. Even as I write these words, it doesn’t seem quite real. I know I’m still harboring some hope, but I need to get that shit out of my system because in the next week I’m going to have to take care of MJ post-surgery and Will simultaneously. I’m just not ready to say my goodbyes. But goodbye is coming and coming quick.
Thank you all for your support, thoughts and prayers over the last two weeks. I just wish I had better news to share.