Twins diagnosed with Down Syndrome: what would you do?

I have a serious question. One that I am not trying to judge people on based on the answer. I have a true curiosity. So please don’t be offended, I am just trying to expand my understanding.

I saw an image awhile back of a child with Down Syndrome holding a sign that said “I am one of the 10% of people diagnosed with Down Syndrome who wasn’t aborted” or something along those lines. I don’t know where this fact came from, and I don’t necessarily agree with having a small child promote their parent’s political/moral/religious beliefs.

But it really got me thinking. There are a lot of twins in the world. In fact the number is increasing, now 1 in 30 babies is a twin. My question is based around that.

If you would tend to terminate a pregnancy a child (or if you prefer, fetus) diagnosed inutero with Down Syndrome, what would you do if you were carrying twins and only one was diagnosed and the other was “normal”? And what is your reasoning around it.

My curiosity is sincere, I would never use the information against you or to belittle you, I just need a better understanding. Please leave me a comment or email me your response: novaktrueblood@gmail.com

I always love to hear from everybody, writing this blog has introduced me to new perspectives and given me a lot of personal growth. I hope it continues to provide insight and new perspectives to everyone who stops by.

Spending the last three months in a hospital has entirely changed my perspective on the medical system. Not what I believe or believe in per se, but emphasizing my beliefs and reinforcing them with the realities of medicine.

Regardless of how you feel, before President Obama, my son would not get health insurance. At least not from a private institution. Since Emerson was diagnosed in utero with a medical condition, he would have fallen under a pre-existing condition and, under the old laws, no one would have had to carry him.

Which means the entire burden of health care would fall either to my family or to the government (aka your tax money).

Anyone want to ballpark how much Emerson’s first stay in the hospital is? Before insurance.

I’ll give you a hint. For the ROOM ALONE it runs $5600 a day. We’ve been here 88 days (when we leave it is day 96). Each consult with a specialist runs between $100-300 dollars. We’ve seen 19 specialists. over 88 days. multiple specialist a day. To put Emerson under anesthesia, it ranges somewhere around $1,500. He’s had 3 procedures where he’s gone under and one more planned before we leave. We have yet to see a surgery bill. We’ve seen no bills for therapy. or medicine (which might be covered in room costs, but I don’t think it is). One of the medicines we were on cost $1000 a day and we were on it at least 30 days.

So we are looking at a total bill of easily over $500,000 before insurance. For our son. who is 88 days old.

obviously there is something wrong here. Let’s start with something simple: the cost of the room each day. This covers the equipment, supplies, and nurses. The hospital was recently remodeled, all the rooms on the CVCC are sponsored by private donors so the cost is not compensating lost money from remodeling. And I could have a really bad understanding about how much a room costs and what is covered, but I know absolutely medicines and doctors are not covered in the daily costs (I’ve gotten doctor bills and my nurses all tell me how much every med is and how much every blood draw is and how much every x-ray is).

So let’s look at medicines because that has a couple factors to it: the hospital, the insurance company, and the pharmaceutical company. I used to believe the argument that medicines cost so much to offset the cost of creating the medicine. But I’m calling bullshit on it now. And maybe the prices are inflated too much not reflecting the actual money transferring hands, in which case reform still needs to happen to make the numbers realistic.

One medicine Emerson was on, according to the doctor prescribing it, cost $1000 a day. We were on it 30 days for a total of $30,000. Now, we were probably on it a little longer than most kids. Most kids get it anywhere from 3-10 days (conservative estimate, some kids are on it a lot longer than Emerson). At this hospital, every cardiac kid gets this particular medication during surgery. At any given time there are 10-25 kids on our floor. So on any given day lets estimate that there are 3 kids on the medicine. And we will say, to make it easier, that there are three kids on this floor in this hospital on this medication. That means, from this floor alone, the medication brings in $365,000 (which is probably a low estimate). From one floor of one hospital. Since it is a pain medication you can assume other children on other floors are also on it, but I’m not going to estimate that. Say there is a 10 year window where this is the drug of choice for doctors on this floor. That means in ten years, conservatively, this drug will cost patients on the CVCC floor of this one hospital: $3,650,000. The pharmaceutical companies make more the three and a half million dollars from this medication from one floor of one hospital. AND THAT’S CONSERVATIVE. There is absolutely no way that in the course of ten years companies do not more than make up their losses.

And, personally, I do not believe in the field of medicine (be it insurance, hospital, or pharmacy), a profit should be made. Now, do I think it is reasonable for costs to increase to compensate for inflation? Absolutely. Should CEOs at these companies have million dollar bonuses? Absolutely not, because guess what: They’re screwing us over.

In fact, a lot of the administrative policies get in the way of medicine at Children’s. Yes, it is important to provide safety and promote the best possible work place, but it is also important to have the most efficient, logical medicine. And the highest-paid person in the hospital should not be someone who does not practice medicine.

So before you start screaming socialism and the end of democracy when the idea of health care reform is brought up remember two things: 1.) we’re getting screwed from all sides when it comes to health care, everyone is inflating costs to make a profit 2.) before the meager reform that our President passed, you still foot the bill for people who couldn’t get health insurance (like my 88 day old son who has totaled over a half a million dollars) and the people who were on the public systems couldn’t help pay into them, even if they wanted to.

It’s a fickle thing welfare… it helps you but only to a certain point. It doesn’t encourage saving (did you know if you have only $3000 saved you don’t qualify for some programs and, for our family, $3000 is like pissing in the ocean) and it doesn’t let you contribute what little you can. but that’s another story.