Perfect Soul, Imperfect Baby: The News

Part I: Tuesday, August 6. 

The News.

It's amazing, nay, MIRACULOUS, how many biological things must line up just right in order to get pregnant. They say that even if you time everything perfectly with ovulation, there's only a 25% chance that the egg will get fertilized. After that, assuming the fertilized egg implants properly in the uterine wall, there is still another 25% chance that the pregnancy won't end successfully and there will be a miscarriage. Again, that does not include any pregnancies with developmental or health issues. So, in essence (assuming my math is correct), there is only an 18.75% chance that you'll have a complete pregnancy and birth a baby from each time that you try to get pregnant. Now, most babies are born healthy. In fact, 96-97 out of every hundred babies are born healthy, but that means three or four of each hundred have some type of birth defect. This further affects numbers, reducing the likelihood from 18.75% to 18% that you have a healthy baby for each time you try to get pregnant – and that's not considering other individual factors like family history, biology, or age.

I have three beautiful children, ages five and a half and younger. My two crazy boys and my crazy little girl. And we want a number four.

I got married relatively late, at thirty-four years old, and so my husband and I started trying for kids only four months married. I always tell couples that if they have the luxury of time, they should most definitely get to know their spouse before starting the baby-making since it's not an easy path to follow. And so far, we've been lucky. We were three for three in the span of five and a half years. Until now.

I haven't had a good feeling about this pregnancy the entire thirteen weeks. I've been more nauseated than usual, cramping more than usual, my skin was more messed up than usual… all relatively minor things, but at about seven weeks, the ultrasound showed the baby disconcertingly small though it did have a heartbeat. We then came back again at nine weeks.

My bad feeling continued. Each time I went to the bathroom, I would expect to see red. I dreamt of it. I was having so many cramps for what I hoped was a regular pregnancy, but I figured I was overthinking things and simply didn't remember all the details of my previous pregnancies. It happens. And at the nine-week ultrasound, everything appeared to be okay so we scheduled the nuchal translucency thirteen-week ultrasound for the morning of August 6 – three days before the anniversary of my mom's death six years ago and five days before Tisha B'Av (the national day of mourning for Jews).

The boys were home with a babysitter, the little one was at Gan, and we came in. The ultrasound doctor first completed an external scan to measure the nuchal translucency fold behind the neck, but things didn't look so great. It was very thick, almost 9mm (it's supposed to be 2mm or less), and there was fluid around the baby's stomach as well (should I say fetus instead?). The doctor seemed very serious and switched to an internal scan to get more measurements. The baby didn't seem fazed by all the activity, lightly dancing around the screen. The scan ended, my husband occasionally taking pictures of the ultrasound.

Years ago, I had assisted my best friend in studying for her ultrasound exams (she's now an experienced tech in the States) and helped her learn to identify all the body parts in a scan, what measurements were supposed to be, what a healthy scan looked like, etc. I looked at our scan that was on the monitor and something didn't look quite right.

We finished and the doctor turned to us and said bluntly, "that wasn't a good scan."

At first we misunderstood. Did we need to come back in a week? Was the baby not cooperating? Again he said to us, "that wasn't a good scan." He went on to explain that there was a lot of fluid at the back of the neck and around the baby's stomach. The blood flow inside the baby's stomach wasn't right either. Basically, he was certain there was a 90% chance that this wasn't a healthy baby and wasn't a healthy pregnancy. He gave us permission to end the pregnancy and said that anyone who saw the results of the scan wouldn't question it. He told us this information while the internal ultrasound wand was still inside me.

While I was laying there.

While my husband sat next to me.

While we were looking at this little thing bouncing on the black and white screen.

The physician told us that he'd explain further at his desk so I cleaned up, stunned, and my husband and I sat together opposite the doctor. He had to finish typing his notes first, so I sat there, listening to the hunt and peck of his fingers on the keys, each one sounding like a stick on a drum echoing in an empty orchestra chamber changing the rhythm of my life forever. He typed out his notes for what felt like forever and I knew I was disassociating as I listened and watched him hunt and peck for each key, tapping out a word, making a sentence. Another sentence. Tap tap tap boom tap tap tap… tap boom.

Tap tap.

BOOM.

Again he told us the results and explained that we had two choices. One was to end the pregnancy immediately; the other, to speak to our ob/gyn and get information on additional testing at the hospital with a CVS or amnio. Either way, we should act quickly, but we should know that it was definitely at least 90% likely that it wasn't a healthy baby. He was sorry, he said remotely as if suddenly remembering to be human… this must be a bolt of thunder on a clear sky (Israeli idiom). He folded up our paperwork and pictures, slid them into an envelope, handed them over, and that was it. I stood, stunned, with wet eyes, shook his hand professionally, and walked out.

From that point forward, all I have seen are strollers and babies. Pregnant women and little kids. I know I have three healthy kids at home and I'm feeling very lucky. I haven't told very many people since I'm still absorbing and processing all this, but here are some of my initial thoughts:

• I don't want your sympathy.
• I don't want you to tell me that "a not-healthy baby is still a baby." Maybe I didn't express myself well since I was still absorbing the news, but I'll be lucky if the pregnancy continues past 22 weeks or I don't miscarry tomorrow.
• It is not your news to tell anyone else.
• No, I don't want to talk to anyone.
• I know myself and I mean it when I say that the more I know, the better I feel about it (i.e. let me do my own medical research online).
• I do NOT want to hear that women my age have increased dangers – I am well aware of the statistics. And statistics are just that, until you are the statistic.
• It feels so surreal.
• I am a statistic.
• Leave me alone.

My husband and I are stunned. He is angry at the bedside manner of the doctor. He is upset because he hadn't quite gotten used to the idea that I was pregnant and now, it was suddenly stolen away. I am... I don't know... stunned. Up and down. Disconnected, upset, quiet. In disbelief. Laying down, I can feel my uterus and I know that there's a tiny little life in there. It seems surreal and incorrect that this little thing is unalterably broken.

What I discovered on my own (yes, Google can be helpful): Without using particular medical terms, whether it was because English was his second language or that he simply didn't want to use it, my baby has a really bad case of non-immunehydrops fetalis, a rare and serious fetal condition defined as abnormal accumulation of fluid in two or more fetal compartments (usually the neck/head and stomach). When it is diagnosed as early as it was in my baby, 12-13 weeks, the vast majority of the time (75%) it is due to chromosomal abnormalities. See, hydrops, as it is called, is not the cause of the problem, but rather the result of an underlying issue. In my baby, in addition to hydrops and the likely severe chromosomal issue, the umbilical cord is connected to the baby in the wrong place. Instead of going through the shunts that babies have/need since their systems aren't developed yet, the cord is connected directly to the IVC (inferior vena cava), which, medically, means that the faulty system is, and will, negatively affect filtration of the blood as well as oxygen to the liver.

Altogether, Superbaby or Nougat (as we fondly like to call it), ironically, did an excellent job of doing a crappy job of developing properly. My kids do nothing halfway. How lucky we are.