The incidence is approximately 1 in 10,000 births and is the most common lethal bone dysplasia.
I only wanted a healthy child (ten fingers and ten toes was what I always told everyone that asked, and I meant it) but my wife was really hoping for a girl. You see, I was a bit of a terror growing up and she didn’t want to be put through the hell that my Mom was by any progeny of mine. To counter this, I had been taunting her by saying that for karma’s sake, I was going to hope for a boy. We were 22 weeks along.
Well, we were seeing a new OB/GYN this time around and he was to perform a very thorough ultrasound. The first thing he noticed was that it was a boy. That’s right, I was going to have a son. I was secretly overjoyed but only pumped my fist a couple of times. Mostly, I wanted him to be healthy.
I haven’t crossed my fingers for that long in my entire life. The whole procedure lasted about half an hour and my hands ached by the end of it. The only thing they noticed that was abnormal were his femurs. They were a bit short. His head measured twenty-two weeks but his femurs were only at nineteen weeks.
“No big deal,” I said, “I’m not the tallest man on the planet and if my boy’s going to be short like his Dad, more power to him.”
Famous last words.
The OB/GYN said he would show the ultrasound to a friend of his who was a perinatologist: an obstetrical sub-specialist concerned with the care of the mother and fetus at higher-than-normal risk for complications.
Hmm, I didn’t know that, but if he’s going to show the ultrasound to his buddy over beers, then more power to him. We’re having a healthy little boy, Doc, he’s just going to be a bit short.
Friday rolled around and I got a call on my cell phone. Weird, not a number I recognized, but I picked it up anyway. It’s the OB/GYN.
He said, “I haven’t been able to reach your wife, but I’d like to give you an update.”
“Go for it.”
He said, “There could be further complications and my friend would like to see you both on Monday. If you call and make an appointment right now, they’ll be sure that you get in as quickly as possible.”
Alarm! Everyone knows that doctors don’t bump people in without a helluva good reason.
The weekend passed in a series of tears and worry, arguments and hugs. Searches on the internet about dwarfism and possible chromosomal issues become the main focus. We delved into this hard and came up with a few other possibilities. I told my friends and family, “We’re having a boy but there may be problems. If there are, we will deal with them and hope to raise this child no matter what.”
I garnered little support from my family, but they did skeptically understand. Her family is a bunch of tree-hugging hippies and they completely understood our position. I feel like a bit of an outsider, but I’m happy they’re there for us.
Monday rolls around none to soon. I go through my morning routine with a shadow behind me every step of the way. It’s my wife. She’s actually been forced to get up at a reasonable time, and I’m proud of her.
We go to the Perinatologists’ office, which is quite a bit of a drive on La Cienega, but we make it in time nonetheless. We are invited into a relatively empty office and give our insurance cards. We only have to wait for about five minutes before we are ushered into a room with a really fancy ultrasound machine.
The doctor looks at my PSP (I bring it to all doctor’s visits to pass the time in the waiting room while my wife reads) and remarks, “That is awesome. What all can it do?”
I beam in pride at my little mule and rattle off some of its abilities. He seems thoroughly impressed.
My wife lies down on the table and they begin the ultrasound.
“Wow, that’s a helluva machine you’ve got there, doc”, I say to him.
He replies, “You’ve got your toys, I’ve got mine.”
He futzes with the ultrasound machine and takes a ton of measurements. Then his partner comes in and she does the same thing. Then the original doctor comes back into the room and they both explain the situation to us.
It seems our son is suffering from a condition called Thanatophoric Dysplasia. That’s Greek for deathbringing dwarfism.
Thanatophoric dysplasia results from a sporadic defect in the fibroblast growth factor-3 gene, a transmembrane regulator. The disease is lethal, usually shortly after birth due to respiratory failure. The incidence is approximately 1 in 10,000 births and is the most common lethal bone dysplasia.
They both explain to us, “This is nothing that you could have done anything about. This is not something that you had any control over. Your smoking (me, not her) and eating habits didn’t factor into this at all. It is very rare, but always incompatible with life.”
That’s a pleasant way of putting my son’s chances of living at exactly zero.
They call the OB/GYN and he makes an appointment to get us into his office that afternoon to begin the termination process. Remember that line above about doctor’s not getting you in unless something was extremely wrong? Yeah, it still holds.
My mother-in-law and her husband arrive at our house between the first visit and the second. She and my wife have a tearful greeting while me and my father-in-law go out on the porch for a smoke. We make small talk and discuss things other than what is really about to happen. We bury our feelings deep.
We arrive at the OB/GYN’s office and are forced to wait for an hour while they get everything ready to begin the procedure. I play my PSP, while the rest of the clan reads whatever is available in the office. A few pregnant women come and go and my little trooper only whimpers a few times. She’s stronger than I ever thought she could be.
We get into the office where the procedure will take place and I avert my eyes as they begin sticking seaweed sticks into her nether region. I hold her hand as she lies on the table only sucking in a few hard breaths. I tell her, “I love you.”
Tuesday we go back, just her and me, so they can perform the procedure all over again. It’s damned early this time and the doctor comes in wearing scrubs. Obviously he had to make room in his schedule to see her and I am thankful for that.
The doctor tells me, “The hospital is expecting her at 6:00 a.m. tomorrow and we can continue the procedure.”
I take her home and go to pick up the antibiotics that have been prescribed for her. I head to Ralph’s, almost in a daze. I submit the prescription for filling and decide to do some shopping while I wait. I am starving and pizza sounds very tasty. I don’t figure I’ll be cooking much over the next week and I need something to get me by on the quick.
I’ve been keeping it together pretty well up until now. Tears only well up every once in a while and when they do, they are quickly quashed.
A line from a song keeps repeating itself in my mind.
“Boys will be strong,
And boys soldier on”
I cling to it like a lifeline. I’ve been doing this since Monday morning to prevent myself from collapsing.
Then it happens. Vanessa Carlton…oh, no.
“You know I’d walk a thousand miles
if I could just see you
if I could just hold you
I know what the song is about but I interpret it differently this time.
Keep it together. I make a beeline to the cashier and hurriedly pay with a quick nod and a thank you.
I practically run to the car with that haunting piano chasing me the whole way. I put the pizzas in the backseat and go back in to pick up her prescriptions. When I return, Vanessa is gone.
That’s the last time I’ll probably ever say that again.
Wednesday morning we get up early and go through the shadow process all over again. My wife is more tired than anything so she’s able to keep it together. We meet her mom and older sister at the hospital. Her sister and her family have driven in from the Grand Canyon after hearing the news of what was about to happen. She’s running on about an hour and a half of sleep and it shows.
I take charge and lead them up to the fifth floor, Labor and Delivery. We are greeted by a very friendly nurse who leads us into a room where my wife disrobes and puts on the clothing she’ll be wearing for the estimated next ten hours.
I am then told that I need to get her admitted and that I’m a bad person for not doing so immediately upon entering the hospital.
I simply reply, “This is where her doctor told me to go when I got to the hospital.”
I’m not at my wittiest at 6:00 a.m.
I head to the E.R. as that is the only admission place open at this time of the morning. The nice lady behind the counter happily takes my insurance card and my wife’s driver’s license. She looks at my wife’s name and why she is in there, notices me holding back tears, looks at the file again and almost breaks into tears herself when she sees what’s about to happen. I put on a brave face and nod.
She gives me the admission papers and I head back up to the fifth floor.
When I give the bracelet to the nurse, she puts it on my wife’s hand. There is much small talk, but I can tell that it is genuine. This woman is concerned for my wife’s well being and mine as well. I thank her for her help.
A few minutes after this, my wife’s eldest sister appears and we settle in for a long wait.
Little did I know how long of a wait it would be for us all.
11:00 a.m. finally rolls around and so does the doctor. Remember the 6:00 a.m. thing? Well apparently that was just to have us sitting around for five hours while he did something more important. I’m guessing sleep, but what do I know? I know that’s where I would have rather been. Actually, he was in scrubs, so he was probably busy fulfilling some other happy couple’s fantasy future.
I can’t begrudge him his priorities.
He removes the seaweed sticks from my wife and then inserts some pills in their place. Yes, I said pills. Apparently they can be taken orally, but it’s more effective if they’re used directly. He leaves instructions with a new nurse, also extremely nice and helpful to replace them in six hours. I do the math. Six hours from now will be 5:00 p.m. We’ve already been here for five hours. This makes the ten hour process a fifteen hour process. Hmmm. Math was never my strong suit. Maybe I miscalculated.
The family sits around and makes small talk. I try to stay as light as I can and when things quiet down, I go back to intermittently playing my PSP and holding my wife’s hand.
We get a knock on the door and the new nurse asks if we would like to see a chaplain.
Now I’ve never been a spiritual person. The only hope that I hold out for an afterlife is battle all day and mead all night. Hell, send me out to sea on a flaming longboat. That sounds perfect to me. I digress. Her family isn’t strictly religious, but they would like to see the chaplain. She arrives. I listen to the drivel this lady spouts and stare out the window. The last thing I want to hear about right now is a forgiving God, a merciful God. Merciful my ass.
Three more hours pass and the the nurse doses my wife again. The last application hasn’t produced any results. We’re in for a long night. The doctor tells the nurse to up it to every four hours instead of six when he is reached.
At 9:00 p.m. per yet a new nurse’s orders, everyone heads for home except my wife’s mother. She offers to stick around and sleep there with my wife so that I can go home and let the dogs out and get some quality sleep. The other two sisters head out with promises to return in the morning.
I get home and immediately mix a stiff one. I cruise the forums for a few. I need to decompress. About midnight, exhausted and more than a bit buzzed, I head to bed. Ah, sweet, sweet entropy.
Early the next morning spell my mother-in-law at the hospital so that she can get something from the cafeteria. I watch my beautiful wife try to sleep and she does so fitfully. They’ve put new pills in twice during the night and she is actually dilating a little. Things are looking a little closer to being over. That may sound selfish, but we are all pretty worn out at this time and I’ve been operating on about 12 hours sleep over three days. I’m still exhausted and in a daze. I want this to be over and I’m not alone.
The doctor comes in, checks things out and announces that this should be over in two hours. My wife’s older sister dragged her husband fifty miles to be by our sides. That’s sweet of her. She thinks she’s going to be home by about 3:00 p.m. Fool.
They put more pills into my wife at 9:00 a.m. An hour later we get a knock at the door. It’s the nice chaplain again and she wants to know how we’re all doing. We ask her if last rites can be performed by her and she says, “Some people have a problem performing last rites on a stillborn baby.”
I am close to tears so I can’t ask what I really want to of her, “Are you one of them?”
My mother-in-law does the talking as I am choked up and I won’t talk. The church lady agrees to look into a rite that will be in accordance with whoever is available that afternoon and get back to us.
This whole time my wife is pretty much in a daze. She talks if spoken to, but only then. She says she’s floating and I’m glad for her.
After another hour or so, we get another visitor. This time it’s a rather attractive lady and she’s nicely dressed. I’d place her in her late twenties or early thirties. She introduces herself as the hospital’s clinical social worker. I guess we’re in a hospital so that makes her a shrink. I guess right. She immediately breaks into that completely impersonal type of interview where she wants to know how we’re all feeling and when someone answers, she asks the next person if they feel that way. You know the sort of back and forth that is meant to elicit tears, well it’s working as I listen to my wife and her mom go back and forth with this woman.
I can’t take it anymore. I grab my smokes, and march out of the room. I ask myself, “Why does everyone want to talk? What is there to talk about?” Nothing is the only answer I can arrive at in my head. The time for talk is both behind us and ahead of us. But not right now.
I finish my smoke and see the shrink walking out of the elevator ahead of me. The thought of apologizing crosses my mind, but she’s too far ahead of me to catch. I jump in the elevator and head back to trusty number five.
My sister-in-law arrives and many hugs and tears are shared by the womenfolk. There is simply too much estrogen in this room but I get through it. It’s now about noon and my in-laws are getting hungry. I tell them to go get some food and that I’ll spell them, since I’m going to have to go home later or so to feed the dogs and let them out. They gladly take me up on the offer and I continue to try to get gold medals in Burnout Revenge. Occasionally, the wife wakes up and I talk to her, hold her hand and tell her, “I love you.” She drifts off.
Another chaplain arrives and this time I’m cornered. I’m going to have to entertain her. I’m not in the mood. She starts in with this whole, God is great and there is a plan bit, which even when I did consider myself Christian, I questioned. I’m in no shape to get into a theological discussion so I just nod and try to answer wherever I can, hoping my voice doesn’t break.
Thankfully after about five minutes of this, my in-laws reappear to save me. They sit down and we ask if she’ll be performing last rites. She says, “Let me check with my superior and see how we can proceed.” Your superior? Isn’t that God? Lady, you people baffle me. A baby is coming into this world and you can’t have the common decency, nay, mercy, to offer a family some comfort?
We pass the hours doing crossword puzzles and the like. It’s actually pretty fun for the first time in almost two days. Well, except for the gray cloud hanging over the room.
The counselor comes back to hand us information about support groups and the like, and I simply and honestly tell her, “Thank you.” I was a jerk last time and don’t want to be one again.
The doctor returns. My wife asks him, “How much pain will I be in, because I’d like to have an epidural?” He unconvincingly tries to talk her out of it, but she asks for one anyway. Good for her. The doctor then tells me something that I had been hoping to hear for about the last thirty-eight hours, “I’m going to stick around and see this to the end.” That was actually quite a relief to hear. I only wished I had heard it yesterday.
An hour later, my wife is starting to feel some pressure and is getting cramps. The nurse on duty is absolutely stellar and gets the anesthesiologist to administer the epidural. My mother-in-law had to leave the room, so I was left to provide moral support while this went on. I did so by pointedly staring out the window. I’m not a big fan of needles, you see, but the nurse held on to her and walked her through it. Once again, that was one stellar nurse.
The doctor comes back at around 8:00 and confers with yet a new nurse. Do they want to try changing up drugs so that labor and contractions are induced differently? They do. They put a new drug into her I.V. and she’s off to the races. She says, “I’m feeling more pressure.” Keep in mind this is pressure, nothing else. She’s had the epidural and it appears to be working.
I have to go home and feed the dogs, and when I return I ask my wife, “How you doing?” and she responds with, “Just be glad you weren’t here ten minutes ago.”
“I was screaming like that woman yesterday that was giving birth in the room next door.”
“Yeah, my epidural wore off and it took ten minutes for the booster to take affect.”
“That was the worst pain I’ve ever felt.”
“I’m sorry, Sweetie.”
I switch to monitoring the contraction machine while my in-laws get comfortable and fight over who gets which chair.
At 11:30 or thereabouts, my wife says, “I think there is something between my legs.” My wife’s mother checks and screams, “The baby’s head is out.” I jump up and run for the nurse. Now, if the last nurse was stellar, this one was in a class outside of the galaxy we know. She was truly the best nurse of the bunch and I love her for everything she did and how much she cared about all three of us.
She grabs the doctor and heads into the room. I immediately leave. My wife and I have a standing agreement that when the baby is coming out, I am out, too. Yeah, I know, but I really, really don’t like to see my wife in pain, especially when there is nothing that I can do about it. I’d really just feel in the way.
Well, I sit outside the room and wait. It’s only about two minutes before my mother-in-law comes out all teary-eyed and tells me the following, “He’s small. Smaller than they’d like, but he’s not a monster. He’s beautiful. He has dark hair (I do, too) and he’s about the color of your shorts (blue). I tell her, “I’d like to see him.” I go in and sure enough, there is the most fragile creature I’ve ever laid eyes on. He’s got my nose and he’s sure enough got dark hair. My wife is crying but telling him, “I love you.” She’s got him nestled to her breast and he’s breathing. Not very well, but he’s breathing. She just keeps whispering, “I love you, we love you” to him while his breathing slowly weakens and stops. She kisses him repeatedly and I do, too. He has the softest skin I’ve ever felt and I suddenly feel so helpless that this seems like a movie that I’m watching in a theater. I want to know that the good guy always wins, but it’s not going to happen this time. I know that in this town, a young boy died and an old man lived. Not a fair trade.
He also had ten fingers and ten toes, just like I wished.
Not in my wildest dreams did I ever envision this happening to us. I felt, and still feel, so betrayed. Thank you very much for reading this. It has really helped me find some solace in what is the biggest tragedy in my life.
Also, every one of those nurses was absolutely the most helpful and caring person I’ve ever met. They just seemed to get better one after the other. I don’t know if they planned that or if it just worked out that way, but they deserve all of the praise in the world.
The final one baptized our son for us. She has a special place in my heart.