Peanut's Story - A Man's Perspective on AHC
Diagnosis: Thanatophoric Dysplasia
By Doug July 1, 2006
Warning: This story contains explicit language (and blasphemy), reader discretion is advised.
Let me tell you about last week. Actually, it's about the last ten days of my life if you want to get technical about it. This is really long
and detailed, so please bear with me. This is tearing me up, so I figured I'd share it and hopefully find some catharsis in the retelling.
My wife was pregnant and 22 weeks along last week with our first child. Until now they hadn't been able to determine the sex of the child. All
we had been told up to this point was that its heart was beating strong and there was its head, there were its feet, etc. 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.
Well, we were seeing a new OB/GYN this time around and he was to perform a very thorough ultrasound last Tuesday. The first thing he noticed was
that it was a boy. That's right, I was going to have a son. The family name was going to go on another generation. 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 he noticed that was abnormal were the boy's Femurs. He said
that they were a bit short. The head measured twenty-two weeks but the Femurs were only at nineteen weeks.
"No big deal." says I. "I'm not the tallest man on the planet and if my boy's going to be a short shit like his Dad, then more power to him."
Famous last words.
The OB/GYN informs us, "He's going to show the ultrasound to a friend of his who is a Perinatologist."
What the Hell is that, you ask? Here is the definition:
Perinatologist: An obstetrical subspecialist 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. Make sure and show him his
dick, too. We're having a healthy little boy, Doc, he's just going to be a bit short.
Last Friday rolls around and I get a call on my cell phone. Weird, not a number I recognize, but I pick it up anyway. It's the OB/GYN.
He says, "I haven't been able to reach your wife, but I'd like to give you an update."
I tell him, "Go for it."
He says, "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.
My wife is not an early riser. Let's get this out in the open now. I'm not necessarily okay with it. I do try to get her up at a reasonable time
every now and again. The last six months have been misery for her since she had horrible morning sickness and is also terrified of vomiting. She'd
just sleep the days away. Eventually the morning sickness passed and she was starting to feel better. She was still sleeping late, though.
What does this have to do with the doctor's phone call you ask? Well, I am sure she is lying in bed counting sheep and I am at work. I need her
to call and make this appointment.
I call our home answering machine about five times yelling, "This is important. Get out of bed and pick up the phone." I call her cell and still
nothing.
Finally on about the seventh call, she picks up and asks, "What the Hell is the matter?"
I explain about the Perinatologist and she immediately begins to worry.
I tell her, "Just make the appointment and we'll talk about it tonight when I get home. I love you."
The weekend passes in a series of tears and worry, arguments and hugs. Searches on the internet about Dwarfism and possible Down's issues become
the main focus. We delve into this hard and come up with a few other possibilities. I tell 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 garner little support from my family, but they do skeptically understand. Her family is a bunch of tree-hugging Hippies and they completely
understand 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. We get up. 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 Hell uva machine you've got there, doc", I say to him.
He replies, "You've got your toys, I've got mine."
Touche.
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 Dwarfism. Deathbringing Dwarfism. Described below for
your reading pleasure:
Thanatophoric Dwarfism 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 crap 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. Like most
guys, 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 6:00AM tomorrow and we can continue the procedure."
I reply, "See you then."
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
tonight."
I know what the song is about but I interpret it differently this time.
Fuck. 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.
Thank, God.
That's the last time I'll probably ever say that again.
Wednesday morning we get up at 5:00AM 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 6:00AM.
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.
11:00AM finally rolls around and so does the doctor. Remember the 6:00AM 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, now I'm
just being a dick. 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. It's 11:00AM. Six hours from now will be 5:00PM. 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 at about 2:00PM 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. Fuck God. Fuck him right in his merciful ass.
Yeah, if you believe the hype, I'm going to Hell for that one.
The day goes on and 5:00PM rolls around. The doctor is not present so the nurse doses my wife. 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.
9:00PM, and per yet a new nurse's orders, everyone heads for home except my Mother-in-Law. 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 off South with promises to return in the
morning.
I get home and immediately mix a stiff one. I let the boys out and 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.
At 5:00AM I am awoken by my alarm clock. I think about it in a hazy sort of stupor, probably from the night before. Please tell me that was all
a bad dream. I reach over to put my arm around my wife and she's not there. At 5:00AM there is no way my wife is not sleeping by my side. Damn it,
I'm not getting off so lucky.
I set the alarm for 6:00AM and drift back to sleep. I am awoken by my cell phone ringing at 6:00AM and I pick it up. It's my Mother-in-Law. She
asks where I am and I tell her in bed, but I'll be there in an hour after I shower and get cleaned up. We hang up. I actually get up this time and
fulfill my promise by arriving at 7:00AM.
I spell her so that she can get some coffee and a bagel 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.
My Mother-in-Law returns and we make small talk. The doctor comes in and checks things out and announces that this should be over in two hours.
My wife's older sister is expected to come back by 10:00AM so that she can be there for the birth. She's dragged her Husband out to return her fifty
miles North to be by our sides. That's sweet of her. She thinks she's going to be home by about 3:00PM.
She's a fool.
They put more pills into my wife at 9:00AM. At about 10:00AM we get a knock at the door. It's the nice chaplain again and she wants to know how
we're all doing. Fuck her. 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, whatever that means. 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 bullshit that is meant to
elicit tears, well it's working as I listen to my wife and Mother-in-Law 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 fucking 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. Not right fucking 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 12:00PM and my Mother-in-Law and Sister-in-Law 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 at 3:00 or so to feed the boys 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.
About 12:45 or so, there's another knock at the door. I say, "Come in", thinking that it's another nurse, or hopefully the doctor, since my wife
is due for more pills. It's not. It's another chaplain and this time I'm cornered. "Fuck, not again" is the only thing I can think at this time. My
wife is out again and I'm going to have to entertain her. I'm not in the mood. She starts in with the whole, God is great and there is a plan
bullshit, 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 as badly as I know it is.
Thankfully after about five minutes of this shit, my Mother-in-Law and Sister-in-Law reappear to save me from certain demise. 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? Shit
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?
Fuck you all.
I duck out to grab a bite and head to the not so trusty cafeteria. My lunch is utter crap and I head back upstairs.
When I get back, my wife is awake and lucid for the first time all day and she asks, "What happened with the religious lady?" Thanks, Mom. ouldn't
keep that one to yourself, could you?
I reply, "I'm not a fan of God. He is taking our son, our innocent son, and for that he can go eat a dick."
I'm already going to Hell. I may as well stick with precedent.
At 3:00PM I go home and feed the boys. While there, I pick up some entertainment for us to pass the time and get back to the hospital as quickly as
possible.
We pass the next few 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 councilor 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 at about 5:00. 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.
At about 6:00PM, my wife is starting to feel some pressure and is getting cramps. The nurse that was on duty was absolutely stellar and gets the
Anesthesiologist to come by and administer the epidural. My Mother-in-Law had to leave the room due to some trauma earlier in life, 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 8:00PM and he 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.
At 9:00PM I head home to once again let the boys out and feed them. I explain to them in dog (not a furry), "I'm gonna be gone all night boys,
but hopefully tomorrow when I get home, she'll be with me." They don't seem to understand, but they go to their respective areas and lie down.
On the way back, I am no longer able to valet park at the hospital, so I have to look for parking on the street. I find a spot about two blocks
away and park, but I'm not clear what the parking delineation for this street is. I think I'm okay, but what if I'm not? I walk back to the hospital
and see a choice spot has opened up. I race back to the car and hop in. As I'm driving back to the spot, I see tail lights pulling into it. "Damn
it." I then tool around for ten more minutes until I find a decent spot. I am so lucky that I did that.
I get back into the hospital at about 9:45PM and see my Sister-in-Law monitoring the contraction machine. I ask my wife, "How you doing?" and she
responds with, "Just be glad you weren't here ten minutes ago."
"Why?"
"I was screaming like that woman yesterday that was giving birth in the room next door."
"Oh, really?"
"Yeah, my epidural wore off and it took ten minutes for the booster to take affect."
"Ouch."
"That was the worst pain I've ever felt."
"I'm sorry, Sweetie."
I switch to monitoring the contraction machine while my Mother-in-Law and Sister-in-Law get comfortable and fight over who gets which chair.
At 11:30PM or thereabouts, my wife says, "I think there is something between my legs." My Mother-in-Law 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'm a pussy, 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. Sue me.
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 Hell, to me. 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 actually
Baptized our son for us. She has a special place in my heart.