5.28.2011

A little venting...

Choosing whether or not to have an amniocentesis was a terrible thing for us. Although we like the idea of knowing whether or not we will have to prepare for a child with more 'needs' - risking our child's life to find that information out early seemed to be too much for us to handle. The risk is 1 in 500- or 2 in a 1000 as they explained to us. Neither sounded better.

When we found out our Gabriel 'Definitely has something wrong with his heart' from the high risk clinic- the doctor at the clinic practically slammed us into a wall with his opinions. He told us the risk of our child having a genetic anomaly was 40 percent or higher, which was incorrect, and he presented it to us in a way that made it sound like if we chose to keep our baby safe and not do an amnio, we were being selfish, and irresponsbile.

At this point, the amnio is not going to benefit us. It will benefit doctors in a small way, as they can find out if he has a serious medical condition (which there were no other signs of via ultrasound) that would leave him dying with or without surgery. In this case, they would not do surgery.

However, more likely than not if he had any medical condition, it would be Downs Syndrome. Nick and I were told before he we found out about the heart defect that he had indications of Downs. Those were all proved to be false indications (the ultrasound tech was measuring incorrectly). But it didn't phase us. Downs Syndrome children are not looking at not having a full and happy life, they aren't looking at being wheelchair bound, they are looking at being a little bit slower on the same milestones Judah is working on right now. They spend their life happier and more blissful than many, and many of them live normal lives, seperate from their parents, as they get older.

Going into the ultrasound at the high risk clinic I was hoping to myself... "Let it be downs, I can deal with that fine.. Please just let his heart be okay." But unfortunately, his heart was not okay.

Now, anytime a doctor presents the idea of your child having Down's Syndrome, I want to forewarn you they will present it like your child is part manatee. They will present it like a horrible loss- something that will be so much more difficult and horrible to deal with.

At our OBGYN appointment yesterday, our nurse was the ever happy lady she always is, helpful and friendly- getting all the referrals in place for us and praying for our little one. Our doctor is not the reason we go there, and we would have left months ago if our nurse wasn't so helpful and friendly- and a Christian, which is always a plus.

Our doctor came in, our large file in hand and opened up conversation this way. "So you talked with them over there and now you understand why you need to have the amnio- right?" Immediately I couldn't make eye contact with him- because he assumed that we had decided to risk it, and he gave me his opinion straight out with the way he said it.

"I mean, if there is a genetic condition it would change surgical options and- Blah blah blah." He started to sound like the doctor at the high risk clinic.

"Actually, we were told if he had Down's Syndrome it wouldn't change anything surgically, he would need heart surgery still." I said, feeling a surge of adrenaline, which I kept under control.

"Well... According to his notes if he had it it might change- like it could indicate other issues and change the way surgery would be done." I'm paraphrasing, of course.

At this point, I knew exactly what to say to make him look like a big flabbergasted man with a PHD that means zilch.

But I held my tongue.

The fact is, that our son has a complicated heart defect, and they won't know until they are opening him up on the table what he has going on. The fact is, our son is going to be tested for every thing under the moon when he is born, and I will probably get to hold him for all of five minutes (if that) before he is rushed away to another hospital where he will be tested and monitored and stared at for days.

Why would I risk my sons life for the tests that they will be repeating when he is born?

We reached this decision the day before our doctors appointment, that we were not going to do an amnio, because the small risk is the same risk that our child would have a heart defect, and he does.

And for that 1 person in 500 who loses their baby, it's 100 percent. Their baby could be perfectly healthy, and they have to live with that every day. We decided not to risk that pain.

So this is my vent- in dealing with doctors they want the information as fast and as easily to them as possible. They do not put their patients preferences or hopes first, and this happens to be our preference. So please, don't let yourself be pushed into tests or anything that you are not comfortable with. Doctors will throw out numbers that are inaccurate, outdated, incorrect, or just made up to get you to do what they want, or because they are too lazy to look it up themselves.

We have discussed letting them do an amnio when he is full term, so there would be no risk of miscarriage, and that is of course an option that we will discuss as it gets closer.

Why do they need the information now? Well. Because it's more convenient for them.

God bless us to stay strong and make the best decisions that we can in the next months/years.

2 comments:

Anne said...

God bless you all. You have made the right decision for your family and I am glad you stand strong in your decisions. Love you all.

juroguitar said...

Thank you Anne, you are so sweet. We are so happy to have met you!

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