Perfect Soul, Imperfect Baby: The Confirmation

Part II: Thursday, August 8

The Confirmation.

Early this morning, without an appointment and under advisement from our ultrasound doctor, we slipped into Dr. Feldman's office (our ob/gyn) to get a consult with him about the results. He's a very reasonable fellow, knowledgeable, speaks English, has a good bedside manner, and very clearly cares about his patients. Out of all the gynecologists in this country, he's my favorite. My husband and I sat down, not expecting good news, and, sadly, he obliged. 

He looked at the ultrasounds, paperwork, and detailed information and was extremely apologetic. When a doctor looks at things, what you want is "unremarkable." That's not what we got. 

He gently gave us advice and choices, sad smiles, and told us that it was likely serious chromosomal defects in the fetus, who would likely not survive even until birth. Quietly, he suggested we should terminate. I already knew the answer, but I asked quietly if it were fixable - maybe I had made a mistake, maybe I had misunderstood the research I had done, but he shook his head and said, no. I started crying again. 

Dr. Feldman said what we could do is get additional information by calling his friend, Dr. Drugan (a genetic specialist) at Hillel Yaffe Hospital in Hadera. Honestly, he said, we could just drive up there and see if he'd see us in person since it's only about 25m away. 

My husband and I looked at each other and immediately drove to Hadera. Parking was a little difficult with all he construction, but then we walked into the beautiful hospital that had huge (fake) birds flying in the expansive foyer. We wandered around until we found Dr. Drugan, and, surprisingly, he accepted us for a quick consult - again without an appointment - when we told him it was urgent. 

He sat us down, looked at the information, and shook his head. He gave us the same information as the other two doctors, that not only was it likely that the fetus wouldn't survive to birth, but also that I could miscarry at any time (which may explain my constant cramping). The specialist told us we had two choices: we could either end the pregnancy immediately with a D&E or we could get a CVS/amnio to see the reason for the chromosomal defects (and then get a D&E). We did have to keep in mind that test results could take up to a week, even expedited, which could then affect what type of procedure I might have to undergo.

Dr. Drugan mentioned this specifically because his hospital, Hillel Yaffe, conducted D&Cs only until thirteen weeks. Rambam Hospital in Haifa performed them until fifteen weeks, but either way, I was past the 13 week mark so I had to decide quickly if I didn't want to be induced and take two days to give birth to my malformed baby.

I couldn't decide about the CVS sitting right there, but the doctor gave us time. My husband and I used it to eat lunch, our first meal of the day since we had been running around. We decided, after great deliberation and reviewing the fact that additional information would not help with future pregnancies, that it'd be best to handle everything sooner rather than later. It was likely just a fluke at my age. We returned to Dr. Drugan, again without an appointment, and told him that we'd like to go ahead with the D&C. 

He immediately took his cell phone out and called his contact at Rambam Hospital, scheduling the procedure for Sunday morning at 10am (they were basically squeezing us in). He also scheduled us to be heard, that very afternoon, by the Committee who grants terminations of pregnancy (he is on the Committee). We ran home, helped our babysitter with clothing and lunch (we had just moved the previous week and she couldn't find clothing) and returned to Hadera in time to be "judged." We filled out paperwork in a broken down little building (I think the Hospital was rebuilding every other building first), met with a highly sympathetic social worker and a very understanding Committee (who must have at least three people: a social worker, a secretary, a genetic specialist, and an internal doctor). Without hesitation, they approved our termination and literally wished us love and good luck in the future.

That's when the trouble began.

Immediately (remember this detail for later) upon leaving the hospital to head back home, we called Maccabi (our health kupa whom we usually love) and told them we need a Tofes 17 – a document that shows the kupa the procedure has been approved and it shows the hospital that the cost of the procedure will be covered, in this case, a procedure that costs over 4,000 shekel. We informed the kupa the urgency of it and that we would need it by Sunday. They claimed they marked it urgent and we would have it in time, an important fact since the hospital would not go ahead with the procedure without it. 

This day had been filled with running around, meeting with doctors, paperwork, and appointments. It was all mental and logical. But the weekend.... the weekend was all emotional.

All weekend I prepared myself mentally for Sunday morning. On Friday, I spent time with my three kids. On Friday night, I asked my husband to give one last blessing to the baby (and cried through the whole thing). On Saturday, I didn't want to talk to anyone and slept late, and on Saturday night, I rubbed my belly, felt my uterus while lying down, and told the baby it was loved and that I was sorry. 

And while I slept, I dreamt of my baby.

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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.