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Posted on Posted in Neural Tube Defects, Spina Bifida

Prenatal Diagnosis—Severe Spina Bifida

There are tons of other details I don’t know I will understand or digest anytime soon, but all in all, we were told this is a case of severe spina bifida and given an option of medical termination.

By James’s Dad

At times I think it is good fortune that I am not a woman. Women have so much more to deal with physically than men do. Recently, however, I’ve felt a bit different about that. I’m a man. I lift weights, play sports, do handyman type projects around the house, and work on my car. Sure I have a shoe collection most anyone would be jealous of and I ran away from a spider web while cutting the grass the other day shouting, “no, no, no, no,” while taking off my shirt in a total panic. Generally speaking, though, I’m a man. Here is where the rub comes in being a man. Men do not talk about our feelings. Then the rest of the world makes comments and implications regarding your strength when you stoically handle some form of difficulty or tragedy. It’s celebrated that in the face of tragedy you “keep your shit together.”

When I was a teenager I had this really aggressive looking Nissan 240sx. I had it lowered, big rims, loud muffler pipes, and a nice paint job. What I did not have was a good engine or suspension or any other internal component that would make the car actually drive as good as it looked. It was all show. I feel like my first car. I’m all show. I don’t know how I’m supposed to feel, but I know I’m keeping it “together” for the outside world. I don’t even know what that means. Keeping it together. I manage to brush my teeth, comb my hair, trim my beard, and overall wear clothes that aren’t too wrinkled these days. If you know me then you know it’s a shocking statement for me to say I haven’t cleaned any of my shoes in months. I look—to the general outside world—like I have it together. Like I’m okay. The reality is just beneath the surface is a post-apocalyptic war going on and despite how much each bomb being dropped hurts and how much the stench of death smells, I maintain this hard, tough, “strong” exterior, which is all a spectacle.

So here are some facts. I’m married to the best person I know. She is funny, compassionate, and one of the most genuine people I’ve ever met. Obviously, I had to lock that down and marry her. Now she is my wife. But she is my wife earlier than planned. Why? Here is the messy part of the story no one wants to talk about, ask about, or admit is reality. We had planned our wedding for 09/22/17. Dana found out she was pregnant, which was a surprise to both of us. We had to move the wedding, but got married legally so she and baby could be on my insurance. So now I’m a happily married man expecting his first child.

After the shock of having a child when you weren’t planning on it had settled down we were both very excited. We planned a gender reveal party and invited all of our close friends and family. This was happening. This was like one of those lifetime movies where two well-to-do white people live in the suburbs and life is just going well. I had almost given into the idea of wearing dad shoes, you know, the typical all white New Balance 623, and some cargo shorts. I didn’t care because I was so happy. I had always assumed I’d have trouble having children because my brother and sister both had tough times, so I was thrilled we were able to conceive so easily. I was thrilled at the idea of being a dad and raising a child with my favorite person on earth. I was about as basic as a stereotype could be in that time. Take away the tattoos, style, and fitness, and I was basically Danny Tanner.

I have a terrible memory for the most part. I don’t remember things vividly from my childhood very often. It takes me several meetings to remember a name. Ask my wife, she will tell you. I do, however, vividly remember the morning Dana found out she was pregnant. She was more thrown off by the surprise of it all. She is a planner and when unexpected things happen that throw off plans she naturally freaks out a bit. I’m more of a survivor and roll with the punches. Neither is right or wrong, but just an explanation of how we react to things.

I remember sitting on our bedroom floor and smiling and having tears of joy welled up in my eyes as I assured her we would be fine and figure things out financially. I vividly remember the excitement and anticipation of the anatomy scan on 6/5. We had a gender reveal party planned and we were going to find out the gender that Saturday. I took the day off so we could just be together and celebrate our baby continuing to grow and hitting a crucial point in the pregnancy.

I didn’t return to work until Monday 6/26. In 21 days my world was crushed and the stoic demeanor so many think is strong is more like the rattling top to a pressure release valve.

The Ultrasound

I vividly remember the doctor coming into the room and talking to us, she said they could not see certain things so they were sending us to a specialist. At the time I thought it was precautionary and didn’t think much of it. The anticipation of getting to that specialist on Tuesday 6/6 was enough to kill me. We arrived and were called back and sat in this massive room with a sonogram machine and sat in silence as the tech did her work, going over every aspect of the anatomy with us. Remember the old school pointer customization you could do on a windows computer? You could turn your pointer into a little gloved hand. I vividly remember her using that pointer to count vertebrae.

1
2
3
4
5
6
7
8

…she stopped placing the little hand over the vertebrae at that time and continued on. I thought, maybe she was just identifying the ones she couldn’t see very well for the doctor.

She finished up and we waited for the high-risk specialist doctor to come into the room…

As I sat in the room with hope we would be told everything was fine and they were taking precautionary measures I envisioned how excited I’d be Saturday when we found out what the gender of our baby was. Instead, I opened an envelope in our kitchen that Friday with just Dana and myself.

It’s a boy! As I type I feel the same pain I felt when I opened that envelope. He was a boy. His name is James! The crushing feeling of having to open that envelope because our gender reveal party was canceled—because of the news of severe spina bifida that we got from the specialist—still haunts me.

Our Hopes were Dashed by Severe Spina Bifida

The doctor walks into the room, a very nice man, soft spoken, and fatherly. He delivers what is the worst news I’ve ever received in my life to date. Our baby is… I’ve typed and erased so many things, compromised, sick, etc. Our baby is fucked. The 8 vertebrae she counted weren’t vertebrae, they were supposed to be vertebrae, but his were “obliterated.” That caused the spinal cord to pull down on his brain, causing his posterior fossa and cerebellum to be pulled down and brain to be under developed. There are tons of other details I don’t know I will understand or digest anytime soon, but all in all, we were told this is a case of severe spina bifida and given an option of medical termination.

We called several specialists around the country and Dana spent an entire day on the phone with the four big players in the fetal surgery specialty. In some cases, they can do surgery on the baby while still in-utero. All the specialists looked at our case of severe spina bifida and gave our son bleak prognoses. A glimmer of hope was present when we thought that maybe we could do the surgery and it would just be a tough road to recovery, however, all hope was crushed with each call and medical experts’ opinion. Even if we were viable candidates for the surgery we would be looking at never having another child again, possible complications that could take Dana’s life during surgery, and a lifetime of brain surgeries for our child. He would have been a prisoner of himself and not lived a life. We decided to make the toughest decision I think anyone can possibly make. We agreed with every medical expert we had spoken to and scheduled the procedure that would set our baby boy free. He will never know pain; he will never know imperfection.

James Sloope changed my life. I don’t say that in some cheesy nostalgic way either. I mean he changed my life, my outlook on what pain and suffering is, and my outlook on what is important. He changed the way I consider others and extend compassion rather than judgment. He made me love his mom more than I thought possible.

One of the more disappointing things I discovered is how lonely this is. In the midst of writing this, I had to step away because I was wrecked and emotionally distraught. I can’t be that way; I have to be strong, right? Right? What is strong. Is it stronger to have chaos just beneath the surface or express what’s repressed within? July is almost over now and once I flip my calendar to August I will no longer have numbers on each Sunday marking how many weeks pregnant Dana was. I’m happy to turn the page because the blacked out numbers are painful to look at. I’m sad to turn that page because those little blacked out numbers somehow represent this weird connection with him. June 14 was 43 days ago. I’ve been “strong” for 43 days. My wife is strong, she has connected with people and told her story. My wife’s strength is enviable at times because I don’t have it. I don’t have a network of support. There is a great Facebook group she is involved in that is all women. Where is the male support? It’s lonely and maddening.

Where is the male support? It’s lonely and maddening. I haven’t felt like myself for 43 days. For 43 days I’ve felt like I’m on the outside of my reality watching it happen. A great fog remains on me, a fog of sorrow, pain, anger, love, and a ton of other emotions I’ve yet to sort through.

This is the first time I’m writing about this and it actually feels freeing, but devastating. I’d give up anything for a pair of white New Balance 623, some cargo shorts, and terrible dad jokes, all to have James here. Until we meet again, I’ll have to get by with memories, silence, and chaos.

I hope this may be something other men who have experienced something similar can read and relate to. I hope there is hope in knowing there are others like us who hurt and aren’t very strong in the sense of what we are told is strong.

 

CC0 Public Domain image via Pixabay.