This entire experience, while one of great growth and education, is emotional. The emotions are for this baby and for ourselves. They swell inside me at different points in the day and can be very overwhelming. One thing that helps settle them is the knowledge that everything will be OK, which I truly believe, no matter what happens. We have faith that things will work out the best they can and everyone will come out better on the other side. In that faith is the understanding of the situation. An understanding that has come from many trips to the doctor, exams that, while not necessarily conclusive, have painted a clear picture of the situation at hand. One test that, according to the two people who we seemed to be trusting most with it, is 99.9% accurate, so there is a lot of evidence to base our understanding on.
Now, as I alluded to the other day, we had a very emotional trip to the doctor on Friday. It wasn’t emotional as in sad, but more emotional as in it stirred us up quite a bit.
First of all, we went to this appointment to check on baby boy’s kidneys, which in the Level II ultrasound had shown larger than normal and that was a concern. It’s also consistent with Downs, though not exclusive by any means. Quite common in fact. The big concern is that the kidneys aren’t functioning properly.
At the exam, they did another complete ultrasound, not just kidneys, including measurements and checking all the stuff that got checked originally…that seemed odd. During the exam, the technician made a comment something like “so we did the Verifi (the chromosome test that concluded the baby had Downs) and we think the baby might have Downs”. Her tone, which was very nonchalant, almost discounting the test results completely, caught me off guard. She continued on for quite awhile examining everything, but showing us the kidneys, that weren’t in any dangerous area based on their size and were clearly functioning perfectly – she even measured again from another angle and could see the baby had processed waste through the kidneys and actually peed it out, so the entire kidney function happened in front of our eyes and was working as it should. Despite that bit of good news, I couldn’t get her tone about the Verifi test out of my head so I finally had to bring it up with her because it was bugging me. So, I said “I gotta ask you…you seemed to discount the Verifi test like it wasn’t necessarily accurate.” She replied with a long, and somewhat personally biased response about nothing being certain til the baby’s born and some personal anecdotes about people she knows with Downs kids and such. It was pleasant and in many ways I really liked her attitude and demeanor, but was still a bit irked at her tone regarding the test as if she knew something we didn’t or just didn’t think it was truly credible. Also, during her exam, she kept pointing out all of the things about the baby – particularly the things that are inconsistent with typical Downs babies – and making us feel like the previous findings weren’t accurate.
Some things of note were -> Our baby is measuring in the 80th percentile, certain parts in the 90s…Downs babies are typically much smaller. The nuchal fold, a hump above the neck, which is enlarged with Downs babies, was not at all an issue and we later found out that it’s only a marker up until around 20 weeks, which when we were originally checked hard for that, it was nearly 22 weeks and even then didn’t officially get into the red flag area. She also specifically pointed out the bridge of the nose and how it was sloped “normally” with a “great” long length, when typical Downs babies are humped and short. There were a few other things like this. All of it made things feel very…well, WTF?
Because of her comments, our results of the day’s tests and some other things on my mind, I asked to speak to the Genetic Counselor again before we left, which the technician said would be no problem since she was in and likely available for us after we met with the doctor.
After about 90 mins with the technician, who was super sunny and cheery, the doctor came in to talk to us and look at some things more on ultrasound. She was a little doomy and gloomy with seemingly no reason. She saw no real issues in the kidneys, agreed they seemed to be working perfectly, but then said we needed to keep an eye on them, but for no reason other than because the Verifi test indicated DS. She, too, made casual reference to Verifi as if it weren’t all that big a deal and wasn’t necessarily accurate. “We’ll know when the baby comes out”, she said. Also, upon analysis of our ultrasound that day and her additional ultrasound, she made a couple comments that are really bugging me.
The first was that the nuchal fold, the marker that was the one that tipped us over the line in our earlier trip to see her, was not something she would have even considered a marker – though that day when we were there, it was the one she focused on the most and the one for which she said our chances of this baby having DS was now down from 1 in 800, to a dire 1 in 4. That was a little annoying as if she didn’t even remember her own words and didn’t really even have a firm grasp on what she was telling us, but worse was the next thing that came out of her mouth. She actually told us that based on the results of this day’s ultrasounds and the way the baby is measuring, AND with the perfect echo (heart exam from the previous week), there is nothing indicating that this baby has anything at all wrong. WTF again?
So now, other than this test confirming DS that we were led to believe is soon to the gold standard and is never wrong, both people we’ve talked to that visit have made us feel like that test isn’t all that valid and every other sign is pointing to this kid not having DS. Oddly, the other medical professionals we’ve seen in the last month seem to either not know about the Verifi test at all or don’t consider it to be anything firm, but rather another screen since it’s not technically diagnostic.
After leaving the doctor and heading in to see the Genetic Counselor, we were both a little peeved and confused. We asked a bunch of general questions to her, but drilled in a bit on the Verifi test. She, above all the others, was steadfast that this test is never wrong, is the best there is and their physicians and hospital were especially fond of it for numerous reasons. Then, she sorta back-tracked by saying it’s just a screen and not a diagnosis. WTF? It can’t be “never wrong” and “not a diagnosis”, at least as far as I’m concerned. Those are sorta mutually exclusive when it comes to telling the patient, if you ask me.
Needless to say, this is very frustrating and building this completely pointless false hope. We are fully gripping the fact that we are having a baby boy – special needs or not – and are gonna love him and parent him and make his life great. I don’t care if he does or doesn’t have DS at this point, I am just completely flummoxed by the inconsistency of our care, the complete lack of support each of the care-givers seem to have for each other’s opinions and info, or at least the manner in which they are talking to us about what we were led to believe is a certainty. Maybe they just need to cover their butts in case they are wrong and we have some grounds to sue them…that’s what this society has come to after all. It’s probably impossible to do your job as a doctor how you really want to because some schmuck could sue you for saying or doing the wrong thing.
I am choosing to still believe that this boy has DS, which I think would be the only approach to take because we have the advantage of being able to prepare whereas some parents who have DS babies don’t get that. And, if he comes out without DS, we’ll think that’s just swell, too. I am just kinda pissed about the way we’ve been handled.
Chelle and I have been discussing how we’ll proceed. Now that we know that the heart and kidneys are doing just fine, we don’t really have any major worries. If there is anything, they’ll check thoroughly when the baby is born and act appropriately then – which, frankly, is what they would have done with any of the thousands of Downs babies who are born each year with DS without any prior heads up. The perinatologist said we should start coming back in a few weeks for weekly ultrasounds which we see no value in at all. It won’t change anything and they are just gonna keep yanking us around…and the cynical side of me thinks they’ll keep getting rich from unnecessary exams…that’s how it feels right now at least. We are leaning to just play the next few months out and leave things in God’s hands. We aren’t big fans of intervention anyway. Liddy was born at a hospital 75 miles away for that reason – we wanted to do all natural birthing methods with a midwife and no intervention and it takes getting that far away to really be able to do that around here.
I’d be lying if the thought of this baby not having DS hasn’t been consuming me the last few days. I’m upset that the folks at the hospital have put that very reasonable thought in my head, especially after giving us zero reason to think anything other than DS just a month ago. I guess the overriding emotion here is just frustration. We’re also generally skeptical of doctors’ ethics and motivation in the first place and the idea of an otherwise perfectly healthy and “normal” baby needing weekly ultrasounds at the high risk prenatal clinic “just to keep an eye on things” seems outrageous and frivolous to me.
I could go on and on. This is really bugging me and it’s hard to write it down in a way to even conveys the frustration. It might all sound like a simple miscommunication or something, but I think it’s really just one of those things that you can’t fully appreciate unless you’re walking in our shoes. I’m upset that it’s getting to me and ruining my excitement for baby Parker, most of all. Hopefully I’ll wake up tomorrow and feel better about it all, but as for today and the past couple, my negative feelings about this last visit are getting the best of me.
On a sunny side, it’s -40 degrees wind chill today…wait…that’s not positive either.
Yesterday was Michelle’s birthday! That’s positive. She’s the best mom and wife in the world and works harder than anyone I know to make our life great, so this annoying and frustrating situation was not welcome the last couple days, so I am mostly sorry that it came around her b-day and the holidays. We’ll get over it and move on in no time, but sometimes you just need to rant and vent and bark like a dog. RUFF RUFF!