Remembering Doria

One Father's Journey after the Death of his Daughter

The Ups and Downs of Ultrasounds

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Just over three weeks ago, we got to have that 20 week ultrasound for baby #2. We found out what we were dying to know when the tech turned to us and said, “Well, it looks like you’ll get a lot of use out of the pink stuff.” We’re excited for baby girl #2, Doria’s Revenge!  More on that to come………

It’s summer, so I need another basketball withdrawal moment. Just recently, the NCAA passed a new rule allowing for expanded instant replay in the last two minutes of basketball games. 2 of the 4 games that led to the decision were games that involved our Cyclones getting jobbed by pathetic referee calls, one against Kansas and one in the NCAA Tournament on a play that would virtually seal our trip to the Sweet Sixteen. Both stunk, both were unfair, and both had a high cost for competition. Still, it was worth it to have the cost, because the chance for the huge gain was there, and it mattered to us. Our 20 week ultrasound had those sorts of ups, downs, and ups again. If you’re wondering why this method, each of those parts is easier in writing than in person, so I’m bravely choosing the keyboard option here. 🙂

The Ups:

We saw our little baby girl. We had a name ready for months, since somewhere around Doria’s death. Our little Zoe Victoria is on the way! Zoe means life, and Victoria deals with victory, and our little girl’s life is a big victory along the way. We’re excited.

Some of this involved camera tricks, but Zoe was into the show. She was bouncing around, had some dramatic hiccups (they look powerful in someone so small), kicking, waving. It was cool. The tech casually did some extra things that we hadn’t seen before, so we saw even more detail than we did with Doria. It was a sweet bunch of victory moments. We even got to take videos home, and those are four seconds of awesome. We have one still picture that looks like Zoe is waving to us. That gets some views on my computer.

Just seeing those pictures and Zoe’s heart beating is so reassuring. It’s obvious that she’s growing and cruising along. No guarantees, but tons of growth. Of course, it wouldn’t be our story without another possibility.

The Downs:

You’re going to get some amateur medical writing here. We learned a new term at our ultrasound: soft marker. Essentially, what a soft marker means is that there is something visible that could or could not be an indicator of major genetic problems. For Zoe, it’s a little cyst on her brain called a choroid plexus cyst. It’s one of those pretty normal things that happens about 1-2% of the time. On its own, it usually means nothing more than we learned too much, but it leads the techs to a bunch of detailed checks and the doctor to look for additional signs. If it is combine with other markers, it indicates genetic issues. Essentially, if other markers occur, it points to an extra chromosome on one of the 23 pairs. So they added some extra detailed checks.

As we talked to the doctor, he mentioned one of the two options, but (gracefully) not the other. He mentioned one that later research calls Trisomy 21. This would be a 3rd chromosome on the 21st pair of them, and it leads to Down’s Syndrome. In the follow-on checks, they look for the absence of a nasal bone, some extra skin on the neck, or her toes splaying farther apart, and some things that I didn’t bother to remember. So far, so good. We saw Zoe’s nasal bone. Her toes are nicely scrunched together, and her neck looks average. It could develop, but it probably won’t. Honestly, the numbers suggest that the odds are greater of a Doria-like tragedy than the development of Down’s Syndrome, which wouldn’t be a tragedy at all. It adds difficulties, but those are things people are successful with, and children with Down’s Syndrome are alive, so that one’s fine either way.

But the doctor twice used the words, “At week 28, we’ll do another ultrasound to see if the cyst remains, and then we should be out of danger.” Since Down’s doesn’t equal danger, that made me curious, but it was clear that this wasn’t a real comfortable thing. Hearing that and a couple other hints, I did some research when we got home. I would hate not to know something that was easier to be ignorant of.

The other option was quite alarming, and brought to mind some of the things they looked at. The other option is called Trisomy 18. The third chromosome occurs on the 18th pair, and the results are tragic. It’s a guaranteed death sentence for a baby. Almost every occurrence results in a stillbirth, although a small number of these children survive to die in their parents arms. Almost none survive past infancy, and it gets rougher from there.

I had wondered why the tech mentioned things like “no cleft palate” and was so subtly insistent on seeing all of Zoe’s fingers. I took for granted that Zoe has a face, and I really took her fingers for granted. It turns out that, after seeing the cyst, those are huge indicators of Trisomy 18. Zoe’s perfect little mouth tells us this probably won’t happen. If the baby’s hands are continually making a fist (or something like that), and the cyst is there, it ain’t good. In our case, Zoe’s little wave was a nice little way of saying, “Mommy, Daddy, I’m alive, and that’s not changing.” As it turns out, I’ve never been so thrilled to see tiny little fingers. I’m not taking that for granted anymore.

Of course, I wanted to know some more. Normally, this cyst goes away quietly between weeks 26-28. That’s probably what happens here. In the case of Trisomy 18, it sounds as though nobody has yet found a case where a child went from the cyst plus no other soft markers to the death sentence. That’s good. It’s theoretically possible, but almost certainly not going to happen. I think that’s the case for Down’s Syndrome as well. There’s something like a 1 in 320 chance, but the odds of the Doria scenario are higher than that, since that is (normally, not just for us) 1 in 200.

So we talked. We had another set of options to face. I think my wife summed it up best when she said (approximate quoting), “We knew the risks going in.” Now we have new names for potential difficulties, but we did go into the Zoe experience knowing what could happen, because we’ve seen death before. We’re choosing hope here, mixed with a little of the normal fear that knows what could happen, but hope. All of the odds suggest that we walk out of the hospital in early September with a beautiful, healthy, crying and pooping machine. We’re counting on that.

I have a recurring basketball fantasy that our Cyclones are destroying some team to the point that the walk-ons are running up the score. In his effort to keep things from getting too awful, coach Fred Hoiberg points to my section and says, “You, in the pink sweatshirt! Get down here! You’re going in!” A zip line amazingly appears, and I fly down to the court. When I’m out there, I shoot 3s with no conscience, because I’ve got nothing to lose.

That’s not likely. Based on where things are right now, it’s almost equally as likely as the worst-case scenarios here. If the worst case happens, Fred owes me. If not, I’ll hang out with Zoe in the rafters, and we’ll have a great time.

Unless there’s a third option, and they find that Zoe has some genetic issue that makes her a referee. I could take a lot of things, but I couldn’t take knowing that our daughter was going to be some kind of referee. That’s just too much.


One thought on “The Ups and Downs of Ultrasounds

  1. “We’re choosing hope here, mixed with a little of the normal fear that knows what could happen, but hope.”

    Looooove this. I struggle with this, too, and I haven’t experienced half of what you’ve experienced. Rejoice in hope!

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