The Worst 48 Hours of My Life
One week ago, I had two doctors’ appointments: the first with Dr. Barbour, the maternal-fetal medicine specialist, and the second with the prenatal diagnosis department.
20 weeks old. I’m halfway there and halfway huge:

The appointment with Dr. Barbour was fine — boring, even. The appointment with prenatal diagnosis was terrifying.
Usually, prenatal diagnosis appointments go like this: first you get an ultrasound and then you meet with a genetic counselor who assures you that everything’s normal. In our case, we got an ultrasound and the tech spent a REALLY long time staring at Bemis’s heart. Like, an extradonarily long time. We finally asked what she was looking for; she responded, “I’m looking for the chambers of the heart. The problem is that I don’t see the two upper chambers.” That shut us up pretty quickly. Eventually, Andrea the tech gave up, printed us a set of pictures, and got the doctor to come talk to us.
Bemis’s face:

Bemis’s face, this time annotated so you can fully appreciate it:

“Good afternoon, I’m Dr. [Whatever]. I’m going to talk to you while Andrea takes some more pictures. Is that OK?” I quickly nodded my assent. “I’ve reviewed the pictures she’s taken so far, and we don’t see the appropriate pieces of the heart. As of yet, we don’t know *what* the problem is; I suspect it’s either an atrial septal defect (ASD) or an atrialventricular septal defect (AVSD); basically, he’s lacking appropriate definition between the chambers.”
Her hand:

His hand, annotated in case you couldn’t see it:

Then, she squinted at the screen and announced, “Oh dear. It may be an endocardial cushion defect, which is strongly correlated with Down Syndrome.”
If you ever want to kill a mother’s high, tell her that her unborn son or daughter may have Down Syndrome. The doctor gave Ben and me a few minutes to discuss the news amongst ourselves; I spent the entire time crying.
And her profile:

Didn’t see it?

We agreed to come back this week for a fetal echocardiogram (which just means an ultrasound of the fetus) and amniocentesis. So fast forward to Tuesday, when we showed up for our umpteenth ultrasound. The tech spent an HOUR taking pictures of Bemis’s heart. When he finished, he reentered the room and took another twenty minutes of pictures. That’s a lot of pictures. Finally, he disappeared and the doctor, a pediatric cardiologist, entered — and began her OWN fifteen minute series of pictures. !!!!
Finally, she holstered the ultrasound receiver back on the hook where it belongs and turned to us. “What I’m looking at is either an atrial septal defect (ASD) or an atrialventricular septal defect (AVSD). An atrial septal defect is a hole between the upper left and upper right sides of the heart; an atrialventricular septal defect is when you also have a hole between the lower chambers. Right now I can’t see clearly enough to tell whether there’s a flap of tissue down there or not.
A normal heart:

Bemis’s heart. Do you see the big, gaping hole between the upper chambers? And the smaller hole between the lower chambers?

“Both conditions are correctible by surgery; it’s not particularly complicated as open-heart surgery goes. We usually do it around 6 – 9 months. He or she will be in the hospital for a week. I want to emphasize that this surgery is almost always successful, with a 99 – 100% success rate. You will have to be careful to protect him from infection until about six months post-surgery.
“I’d like to see you in a month or so for a follow-up fetal echocardiogram.
“Do you have any questions?”
We asked whether it would behoove us to deliver in Boston (nope!) and whether, as Ben had read, Bemis would be on lifelong Coumadin (ditto! — his only medication will be Lasix for a couple months post-surgery). I asked if any of my medications could have caused the heart defect, to which Dr. Villavicencia answered, “I don’t know, but you need them, right? I don’t want you to blame yourself.” We then asked Dr. Villavicencia if she would go ahead with the amniocentesis.
“Well, that’s for you two to decide.” We asked her again.
“If YOUR son or daughter were diagnosed with a large nuchal cord, small femurs and a major heart condition what YOU would do?”
“I’d have the test,” she admitted.
The nurse entered the room shortly thereafter to have us sign consent forms. Ben filled out the sheet listing all my medications. Then the doctor and tech entered. “OK!” the doc announced. “Let’s do this thing!”
Ben doesn’t do very well with needles, to put it mildly. I used to not, either — I almost passed out when I had to give one tube of blood in college — but since my strokes, I’ve gotten quite good at them. At the hematologist in Boston, I gave 25 vials. I still don’t like it — I don’t watch, and my veins are so bloody incompetent that I get poked multiple times at every draw — but I put up with it. But Ben won’t stay with me when I get poked. He would pass out. “Good luck, sweetie,” he told me before he stepped out the door.
“WAIT!” I exclaimed. “If you sat facing me, away from my tummy, couldn’t you stay?”
“No.” That was rather unequivocal. He gave me a kiss and left.
The doctor put my “bed” down so that I was lying completely prone on the table. “Did you do that so I can’t watch?” I asked, completely ready to tell her that she didn’t have to worry because I wouldn’t watch in a million years. She smiled and said nothing. The tech positioned the ultrasound probe so that he could see the baby and the sac of amniotic fluid that they were going for. The nurse stood at my feet and rubbed them. Thank you, nurse!
“A little sting,” Dr. Wheeler announced as she injected the lidocaine into my stomach. That stuff hurts! But the big needle really surprised me. “OK, here I go,” she said. She didn’t even pause to check if I was actually numb yet, she just stuck it right in me. It didn’t hurt, but it was downright uncomfortable; it felt like she was pushing the needle HARD. Also, although my skin was numb, my uterus wasn’t. I guess it doesn’t have pain receptors, but it definitely has nerves.
Dr. Wheeler needed two tubes of amniotic fluid, which she got with no problems. 60 seconds after the lidocaine, she was done.
“That wasn’t so bad,” I remarked as I sat up. The nurse opened the door and Ben came back in.
“Could I see the fluid?” Ben asked.
“It’s the pee-looking stuff on the counter,” Dr. Wheeler said. I was shocked to discover that that’s really what it looked like. Cloudy pee. Gross!
“You’ve got negative antigens, hun,” the nurse said. “I need to give you a shot of [I forget the name of this medication, but it begins with an 'R'] in your butt. That way, if any of the baby’s blood mixes with yours, your body won’t attack the baby.” Ben turned away and I pulled down my pants. I was getting used to being a pincushion. The shot didn’t hurt much.
“We’ll have results for you in two days,” the nurse promised. “You can call us at the number on the sheet, but we’ll call you when they’re ready. We’re open until three.” We nodded. Then we skiddadled; it was one thirty and I was READY FOR LUNCH!!!
Ben left for San Mateo at six o’clock that night and the worst forty-eight hours of my life began. On Wednesday, I watched TV. For most of the day. On Thursday I began calling the doctor. I waited until eleven thirty, which I thought was pretty good, since it was only two hours premature; I left a message. Same thing at 1:30. At two thirty, I called and actually talked to a human being. It was a discomforting conversation.
“Hi, I’m calling about my amniocentesis results.”
“What’s your name?”
“Kathy Brantley.”
“Date of birth?”
“Six-eleven-eighty one.”
“OK, well, the doctor’s got you on her list to call this afternoon, but I don’t know if she’ll get to you. We’re swamped here. I’m sorry!” My mouth hit the ground. I couldn’t believe what I was hearing! Would the doctor seriously go HOME and leave me wondering if Bemis had Down’s Syndrome? She couldn’t! There should be a law!
At two forty five, I gave up all semblance of pride and decided to beg. I called back and talked to the same receptionist. This time, however, I got results!
“Hi, this is Kathy Brantley calling again. Six-eleven-eighty one. I’m calling to BEG the doctor to please give me the results of my amnio today. I haven’t been able to sleep since I had the test performed two days ago. PLEASE …”
“Yes, the doctor will call you shortly.” Good.
Ten minutes later, the phone rang. I picked it up as soon as I verified that it was indeed the University of Colorado Hospital calling.
“Hello, this is Dr. WontReturnYourMessage calling with your amniocentesis results. Your baby tested normal on all the chromosomal tests we performed! Would you like to know the gender?”
Amidst my tears of joy, I politely declined, explaining that we preferred that to be a surprise. “OK, then, let me just assure you that his or her gender is normal, too!” I hung up and immediately began calling everyone I could think of. Ben, of course; my mom; my dad; when I finally stopped crying, my best friend, Nicole; the garbage man; *anybody* that would listen. My baby is going to be okay!
I am SO relieved. I have fallen in love with this baby. I’ve only ‘known’ it for four or five months, but oddly, there is nothing I wouldn’t do for him or her. I would’ve taken the Down Syndrome if it meant that he would be healthy! I’d go in for open heart surgery if it meant she didn’t have to!
I found the pain of the suspicion of Down Syndrome to be almost unbearable, but in some ways, it was better than other kinds of pain I’ve felt because it was so … *pure*. It felt right to be concerned for my baby. I didn’t feel any self-pity; self-loathing, maybe (”Did I cause it?”), but no pity. My pain was all-consuming; I tried to make my brain think of other things, but it didn’t work. My baby was all I could focus on.
Me and Bemis at 21 weeks. Looking at the 20 weeks picture, I realize it looks like I’ve shrunk a little bit; I’m willing to bet that the difference is a big dinner. Like seven pieces of chicken. Yeah, that was kind of a mistake.

Also, I got my first public pregnancy comment from the check-out lady at Safeway down in Boulder on Saturday. Cool beans!
jason said,
February 2, 2010 @ 7:30 am
i’m very happy to hear that the results of the tests were normal!