Saturday, 28 April 2007

Perinatologist, Genetecist, Psychiatrist

I called the perinatologist (I think that is the right term in English for spécialiste en médecine foeto-maternelle) and asked him some questions.

- I will get preliminary results, which is what I presume is called FISH results in English, 24h after the amnio. This will tell me about trisomies 13, 18, 21 and X0 (Turner's Syndrome where there is a missing X chromosome). For the last one I would not terminate, but upon consulting Dr. Google, it seems that the vast majority of X0 babies miscarry. These four chromosomal problems cover 75% of all chromosomal problems. No cell culture is necessary which is why it is fast. In fact FISH stands for fluorescence in situ hybridization, I suppose that means they use special wavelengths of light to check chromosome counts. It's just lucky that the ones they can see with this method are the ones which cover 75% of abnormalities.

- I will get a detailed ultrasound at the same time so they can take a look at the heart and kidneys and other organs again. It is too early to do Doppler circulation tracing though, have to wait for 20 weeks for that.

- BPD (biparetal diameter) and FL (femur length) were also normal. I knew this already but had to check again for some reason. The ratio of BPD to FL can also be taken as a marker for trisomy 21.

- My undiagnosed hypothyroidism at the time of conception could NOT have created a chromosomal problem. The very fact that I was able to conceive means that my hypothyroidism was not severe, it was caught very soon and treatment started immediately.

- I had to ask him a stupid question: do amnio samples ever get mixed up in the lab? Answer: no. The samples are divided and there are two different people looking at them.

I need to call my OB on Monday (she was out on Friday) to arrange to see a genetecist. The specialist said that I would be seen quite quickly, on Monday or Tuesday but that it was best to arrange it through my own OB since she could provide all of the necessary background and details to the genetecist beforehand.

The appointment with the psychiatrist was... useful. (Can't really describe it as good, now, can I?) I'm seeing her again next Friday. She did give me some new trains of thought.

When I said that I didn't want to spend the rest of my life regretting a termination decision, she said I could try to accept that whatever decision I make today is the best decision I can make today. Maybe in three years' time I would make a different decision. Maybe if this was my first child and I hadn't already lost one I would make a different decision. But I have to accept that I am who I am today and I make the decision that needs to be made today as that person, not as me in the future. Does it make sense? It did make sense to me.

When I said that this baby should not be impacted by whatever happened to his/her brother, she said that that is probably impossible since I am impacted, DH is impacted and we are the ones making the decision. She reminded me that it is still quite recent (9 months tomorrow) and that all the times are running in parallel, one doesn't supercede the other. By this she meant - there is a start point nine months ago, there is one a week ago, there is one running until May 7th, there is one until the danger of miscarriage from the amnio is past, there is one until the results. Unfortunately I can't stop one to begin another and to try and do so is futile. (OK, she didn't say that last sentence, it's my very own conclusion).

I generally felt much better about this appointment than I ever did with the ones I had with the psychotherapist after Moksha died. I never felt completely comfortable, always felt a bit ripped off and even slightly judged. I felt like the psychiatrist was really absorbing what I was saying, and pausing to think about her answers before giving them to me.

We didn't get to suicidal thoughts but really, I'm not going to do that unless DH dies as well as the baby. We're still not really getting along all that well but slightly better than Friday. We now have names picked out for a girl and a boy. I asked my mother to knit a small baby blanket, which could be used in a coffin. For some reason I picked baby blue as the colour, but I think blue can go for a little girl as well. On Friday I will have to ask my OB to see pictures of what a 15 - 17 week old foetus looks like to prepare myself.

Since Moksha died I have seen:

- a dermatologist (I had a very severe, itchy, all-over-body rash after Moksha died which did not respond to the maximim dose of steroids, and was eventually diagnosed as a stress reaction)
- a haematologist (for the Factor V Leiden)
- an endocrinologist (for the hypothyroidism)
- a new GP
- my OB
- a perinatologist
- a psychotherapist
- a psychiatrist

and hopefully early next week a genetecist. I have NEVER seen so many specialists in my life. It seems that I see on average two doctors per week. I find this in itself quite depressing.

11 comments:

delphi said...

I think you are doing remarkably well, all things considered.

The insights you gained from meeting with your psychiatrist sound useful and meaningful to me. My grief counselor uses this phrase all the time: "you do the best you can with the information you have at this point in time" (Sounds like what your psychiatrist said). I really believe that is true. Though we may consider our decisions differently as time progresses, we are always attempting to make the best decisions we can. It really is an exercise in futility when we start using hindsight to quantify ourselves. We are so much more than the sum of our past decisions. We are changed by our histories, so that the decisions and experiences that we lived through then shape who we are today.

Basically, I am agreeing with your psychiatrist. :)

I am also glad that you had the opportunity to discuss your concerns with the perinatologist. It seems to me that it would be important to have as much information as possible. And it is much better to receive the information from a specialist rather than on the internet.

And I don’t think that your question about the amnio results was stupid at all! I think it was an excellent question – to keep you from second guessing the results. Better to ask now than wonder later.

Always thinking of you...

M said...

Oh Rosepetal, just so much for you to deal with/digest/comprehend...

The psychiatrist appointment sounds as thought it was beneficial, and it definitely makes sense.

Hugs to you x

niobe said...

You sound so much better. And though it's no fun to see so many different doctors, at least it's encouraging to hear that you're getting all the medical care that you need.

Nicole said...

I am so glad you found a psychiatrist that you are comfortable with, it makes all the difference, I think. All of your feelings are valid and none of your questions are stupid. I am inspired by your honesty and thoughts through this whole process. And, I am so sorry this is all happenning to you right now.

Thalia said...

FISH is where they mix the baby's chromosomes with specific probes of DNA. The probes are marked with fluorescent markers. If you have a trisomy, or an absence, it shows up as a difference in the level of fluorescence.

I'm sorry you have to go through all of this, but glad the doctors are taking time to answer your questions. Fingers crossed it all turns out ok.

msfitzita said...

I just wanted you to know I'm thinking of you. I know that's a pathetic and futile thing, but I am. I'm thinking of you so much.

((((HUGS))))

Julia said...

I am glad you had such a positive experience with your psychologist. I hope you get to a place where if you do have to make the decision, you can be at peace with it.

Thalia is basically right about FISH. The reason they have the probes for these trisomies is because those are the most common ones, so it makes sense to make and have probe for these. The probes have fluorescent tags on them. After the tags are hybridized, you can look into the microscope and see how many dots of each color there are. For trisomies, you will see three dots of a particular color rather than two. Here is a good article about it from wikipedia: http://en.wikipedia.org/wiki/Fluorescent_in_situ_hybridization

Jillian said...

Such a lot for you to take in! The psych sounds like an absolute necessity so it's good news that she's someone who you feel is helpful.

You are handling all of this with such grace. Holding you in my thoughts. x

The Goddess G said...

Just wanted to let you know that I'm thinking of you. Sounds like the counselor had good advice. I wish we had someone like that when we were considering this same decision last time around.
~Carole

Researcher said...
This comment has been removed by the author.
Researcher said...

(((Rosepetal)))

I come here by way of our mutual friend Kate.

I'm so sorry for all you are facing. The psychiatrist you found sounds good. And it's a good plan to view pictures of 17 weekers as a way of preparing, not that anyone can prepare for such things. Keep in mind that the pics you'll find online are almost always photographic images of the little one in utero, so they can look different outside of the uterine environment.

I'm deeply sorry you are suffering. If I can do anything (I volunteer as a support person for post termination women), I will...you don't know me, but I'll help if I can.

Love,
Suzanne