Wednesday, May 28, 2008

So much to say, so little energy

When I was in law school, every semester after finals were over, I'd get sick. Never during finals, thank the gods.

I think now, whenever the latest Brody surgery or hospital stay is over, I just deflate. And possibly get sick. So in an example of sheer laziness, here are some postings from Brody's carepage - - search for Superbrody is you have more energy than me.

My carepages post from May 24-

Things I don't want to forget:

-Brody barking at the airplanes whenever we're at an airport. I suppose he thinks they are dogs? He also thinks horses moo. Other than that, his animal sounds are down pat.

-How simultaneously sad and proud I was of Brody when he sat in his very own seat on the plane. Where is my little 3 pound baby? He looked like such a little man. Right up until he started sleeping on the man next to him. Luckily the guy has 2 little ones at home, and didn't mind Brody leaning on his arm.

-Brody likes to growl at people. Well, roar actually. And once he starts, he doesn't stop. He roared about 14 times to the guy on the plane (before he fell asleep on him).

-Brody is famous. Or we're here entirely too much. When we checked into the hospital yesterday, I recognized every single nurse and aide here. (And yes, girls, Josh was his aide yesterday). I even overheard one nurse say to the other "Brody just checked in!" in an excited tone of voice.

-After getting Versed, aka the giggle juice before surgery, Brody looking seriously at his big toe and saying repeatedly "ball!"

Brody got out of recovery around 5:30pm mountain time. He's on oxygen, and resting comfortably. And by comfortably, I mean he has hardly moved since 5:30. I took him out of the crib and put him the regular size bed we shared last night. I soon realized that he needed all the space of the bed, so I guess I'm sleeping on the pull out bed tonight. Or the crib. Thank the gods we don't have a roommate. We have the crib, the bed and my pull out couch all in the room.

The nurses here are wonderful. I mean, like ridiculously nice and helpful. When I crawled into bed with Brody, he snuggled up to me, and so I didn't want to move. So the nurse insisted on handing me my phone, my dinner, two nurse call buttons, the TV remote, and positioned no fewer than 6 pillows around us so we were properly comfortable. One is sitting with Brody right now while I do the update. I told Brody he was like royalty because he has so many ladies in waiting!

I've met some really amazing folks here today too. I met a couple whose 3 year old daughter has cerebral palsy. They started coming here about a month ago, and have seen the most improvement in their daughter as the past 2 1/2 years treating elsewhere. She was here for a Tae Bo class. I also met a family who relocated from Hawaii to Salt Lake so their son could treat here. And there are these two teenage boys who are in wheelchairs, and they each have a cast on their leg. I'm not sure what for, but they are here for a MONTH. When they are not harassing the nurses by flirting with them, they are wreaking havoc all over the hospital - I heard them get scolded for going down into the parking garage and having wheelchair races.

Anyway, I'm off to bed. It's amazing how much bizarre TV I watch in the hospital. Today I learned about the weapons of the barbarians (aka, the celts, huns, and mongols) on history channel, and then watched a show on Animal Planet about a clinic in India or somewhere that did surgery on an elephant's foot because she had stepped on a land mine.

Monday, May 19, 2008

Things that annoy me

The most annoying thing this week - when people say, however well-meaning, that Brody is a gift from God and has a special mission on this earth. And truly, the people who have said this (or some variation of it) are actually people I like (or love) and against whom I bear no ill will.

But come on.

I agree that Brody is a gift from the universe - because I think every child is a gift. But just because someone has congenital abnormalities doesn't mean they have a special mission on earth. Under their theory, then, that means I have no special mission on earth. What am I, chopped liver? I want a special mission! Come on, please? Or is my mission to mother the gift from God? It's hard to say. Is it the same kind of mission Tom Cruise is on? Is L. Ron Hubbard involved in the assigning of the missions?

And is it just children with congenital abnormalities? What about genetic abnormalities? Cancer? Is it just children? What happens when the children become adults? Are they no longer gifts? Can you return them for other gifts? Like a new car or something? What about a gift card? Can you re-gift? Does Satan give gifts too?

And how is that statement - that he's on a mission from God - supposed to help me, really? Help me feel less badly when he struggles to hold an object because he has no thumbs? Or gets frustrated because his throat isn't wide enough to swallow pizza? God knows better so I should just be grateful?

And look - I am grateful. Well, grateful is not truly the word. There is no word that describes my heart bursting when I see Brody, and hug him or get a kiss from him. When I think about the toxic environment that Brody was conceived in - my womb that acts like a pregnancy is a cancer and was and is very effective at killing pregnancies off like nothing more than a malignant cell - I am. . . astonished that he was able to grown at all, be born at all, and thrive. Granted, this is also due in no small part to numerous surgeries but. . . his vibrance is his own doing, he is a neon color in a black and white world. Just so we're clear. I have nothing but gratitude to the universe for Brody.

I just don't understand the point of the sentiment that he is a gift from God and has a special mission on earth.


I have never thought of saying that to someone who is struggling with an ill child. What the hell do I know about it anyway?

Presumptuous: impertinent, audacious; arrogant. Do not presume to think you know what my son is, or is not, or will be or won't be, even if you think you are being nice.

Maybe it's the labeling that bothers me. I hate the following labels: disabled, differently abled, defects. He is not disabled because he is not a bomb. He is not differently abled because so far, he does what all the other kids do, albeit in a different way and with more style. And he is certainly not defective.

Thursday, May 15, 2008

Headline of the day

I am jealous of the editor who had the privilege of creating this headline:

Shania's Marriage a Runaway Twain

My complaint against my former obgyn

My complaint against Dr. W is two-fold: first, he failed to properly treat my pre-eclampsia and second, he failed to diagnose that my son was suffering from a collection of congenital abnormalities, including the absence of thumbs, radius bones and a kidney, despite several ultrasounds during my pregnancy.

I was a 36 year old woman with a history of recurrent miscarriage before 8 weeks. I began treating with Dr. W in January 2005. At the time, I had had 2 miscarriages. After an additional miscarriage in May 2005, I became pregnant with our son, Brody, in January 2006. I delivered him at 33 weeks gestation, via c-section, on September 1, 2006 due to complications from pre-eclampsia.

I began seeing Dr. W after I transitioned from a reproductive endocrinologist at 12 weeks. Dr. W immediately informed me that I would be induced at around 38 weeks even though, at 12 weeks, there was no medical justification for doing so. In fact, Dr. W did not discuss with me his justification for induction at that time. I later learned from several other Dr. W patients (in the waiting room of his office and in our prenatal education classes) that he regularly schedules inductions regardless of medical necessity.

I began having high blood pressure early in my pregnancy. At around 20 weeks, Dr. W prescribed methyldopa. My pressures kept creeping up, however, even on the medication. Instead of prescribing bed rest, or additional or different medication, after getting a high reading during a visit, Dr. W would instruct me to lay on my left side. Then, while I was laying on my left side, he would take my blood pressure for a second time. The second reading would be within a normal range. However, at times, my blood pressure sitting up would be around 150/100.

Despite my high blood pressure, Dr. W still did not prescribe any additional medication, and he did not tell me to modify any behaviors such as work schedule. He suggested that I be on what he termed as “modified” bed rest which, he explained, would be 2 hours on my left side during the day, and 2 hours on my left side at night. Dr. W knew that I am an attorney and I was working full time in a fairly stressful job.

I had multiple ultrasounds during my pregnancy because of my history of miscarriage. In addition to the comprehensive ultrasound at 20 weeks, I had subsequent ultrasounds every couple of weeks in my second and third trimesters to check for growth and development. Although Dr. W did not attend any of my ultrasounds himself, he did review the results and photos with me during my visits. Dr. W routinely informed me that everything was fine. At no time did Dr. W express any concern regarding the bone or organ development of my baby nor did he recommend amniocentesis. I question now whether Dr. W even reviewed the photos of the ultrasounds.

In August 2006, at around 32 weeks of pregnancy, I went in for a scheduled appointment on a Monday. I had an ultrasound performed by Dr. W’s ultrasound technician. That same day, my blood pressure was 160/110. After the ultrasound, Dr. W indicated that my child had “fallen off the growth chart.” In particular, Dr. W said he was concerned that the baby’s head was measuring very small. He suggested I schedule an appointment with a perinatalogist. He casually mentioned that my fluid was low but did not prescribe any additional treatment or convey to me that there was any cause for concern. At no time prior to this appointment did Dr. W convey to me any cause to be concerned about the development of my baby.

Forty-eight hours later I was seen by a perinatalogist, Dr. S. Dr. S was not at all concerned about the size of my baby’s head, but was gravely concerned about my child’s well-being, my fluid level, and my blood pressure which remained at 160/110. She instructed her staff to bring in a wheelchair to the exam room, and one of her nurses immediately wheeled me into the adjacent Littleton Hospital for admission. Her staff indicated that my blood pressure was at the level at which people experience stroke and that my fluid level, which was presumably the same as it was 48 hours earlier, was dangerously low and was restricting the blood flow to my baby. She prescribed labetalol, which immediately lowered my blood pressure. At a minimum, I believe Dr. W should have more aggressively treated my pre-eclampsia and my high blood pressure or, if he was unable to do so, he should have referred me to someone else sooner. At no time prior to 32 weeks did Dr. W ever suggest I consult a perinatalogist for any reason. Moreover, clearly there are other medications used to treat high blood pressure during pregnancy, such as labetalol, that would have immediately lowered my blood pressure. Had Dr. W appropriately treated my high blood pressure, my fluid and my child’s growth would not have been so severely restricted.

During my hospitalization, Dr. W shifted my care to his partner, Dr. D due to Dr. W's vacation schedule. Although I was in the hospital for nine days before giving birth, Dr. W visited me only once on rounds.

On the 9th day of my hospital stay, in the evening of September 1, 2006, Dr. D delivered my son Brody via c-section. Although my fluid levels had been increasing since I was admitted, the c-section was necessary due to my pre-eclampsia. Brody was born at 3 lbs, 13 ozs and 17 inches long at 33 weeks.

Once Brody was delivered, however, it was immediately apparent that something was seriously wrong. His arms were short and his hands were bent 180 degrees backward. It looked like his palms were glued to the underside of his wrists. I heard the anesthesiologist murmur “Is that because of the low fluid?” to Dr. D, who did not answer. My husband Jeremy, who was holding my hand, began to shake uncontrollably in the OR. The NICU nurses wrapped Brody up, and took him to the NICU.

That night and the next few days, which should have been the happiest in our lives, were among the worst and most terrifying. Our family and friends at the hospital have told me that after Brody was born, my husband fell to the floor in the hallway, sobbing. The neonatalogist informed us that Brody did not have thumbs and was missing the radius bone in both arms. That night in the hospital room, my husband and I wept for hours, not knowing if our son would survive. I had never seen my husband cry before.

The next morning we were told that Brody had tracheo-esophageal fistula, meaning that his esophagus did not connect to his stomach. He had to be transferred to Presbyterian St Luke’s in Denver for emergency surgery. I remained at Littleton until September 4, when I could finally join my husband at my son’s side.

Over the coming days and weeks we learned that in addition to missing radius bones in both arms, missing thumbs, and TE fistula, Brody had only one kidney, and had a fused metopic suture in his skull. His lone kidney is misshapen, and he has a level 4-5 reflux, meaning that not all the urine drains from his bladder. To date, he has had 3 surgeries, and will require several more. Officially, Brody’s diagnosis is Vater, or Vacterl, association.

I’m filing this complaint not because I blame Dr. W for Brody’s congenital issues, but because he failed to diagnose any of them. In fact, Dr. W kept telling me I was measuring perfectly, and that the baby was growing. At no time prior to 32 weeks of pregnancy did Dr. W mention to me that any of the ultrasounds revealed concerns with the development of my baby. And yet, Brody has no thumbs, no radius bones, a missing kidney, a fused skull bone and only a partially grown esophagus. To this day, I cannot understand how Dr. W failed to notice these abnormalities.

Had we known of even some of Brody’s conditions, we would have immediately had an amniocentesis done to confirm that it was not genetic in nature. Instead, we waited agonizing week after agonizing week for the results of the genetic testing to tell us if our son had Fanconi’s anemia, a catastrophic diagnosis that would likely mean mental deficiencies, and increased likelihood of several forms of cancer and a greatly shortened lifespan. Every day I spent the majority of the day in absolute terror that our son had it, as it is also characterized by arm malformations.

Had we known of Brody’s condition, he would have been born at PS/L where they have a more advanced NICU, more experienced surgeons, and doctors who are familiar with Vater/Vacterl association. Instead, my son had to be transferred to PS/L while I was still in Littleton. Instead of being by my newborn son’s side, I was stuck in a hospital 45 minutes away, unable to see him before his surgery, unable to be with my husband and our family during that surgery, and unable to hold my son after his surgery.

I realize that the news of our son’s congenital issues would have been devastating to hear at any point during my pregnancy. But if we had known before the birth, we would have been prepared, emotionally and medically, to handle it and give the best care possible to Brody. We would have had a more positive birth experience, instead of living the nightmare of that weekend and the tortuous uncertainty of the weeks that followed. Even now, 7 months later, and even though I love my son more than anything in this world, the memory of my son’s birth is a heartrending and traumatic memory that has given me countless nightmares and sleepless nights.

Because of Dr. W's abject failure to properly treat my pre-eclampsia and utter failure to detect even the most basic of prenatal abnormalities, the absence of organs and digits, my life was put at risk and more importantly, my child’s life was put at risk. I write this complaint hoping to prevent this situation from occurring to anyone else.

Monday, May 12, 2008

Stop bending the shaft

Google Tom Hanks and Slappy White, and you get the single best moment of Letterman -

Lulu and I, in Boston, eating PB&J sandwiches. You know that saying I hate? "Life is not measured by the number of breaths we take, but by the moments that take our breath away" ? This is one of the moments, because I was laughing so hard. And I still remember it - how many years later? I wish you many such moments. Moments that, decades later, you will still remember, for no particular reason, in the middle of a busy Monday morning, and with a secret smile.