Friday, March 14, 2008

an epiphany

It was my first thought. Trisomy 18. It all fits. Clenched fists with a characteristic 'point' of the index fingers, tiny size (3 pounds at 37 weeks), too much amniotic fluid, under developed fingernails, kidney problems, strawberry shaped head, wide fontanel, low malformed ears, fluid on his kidney and in his lungs, and the choroid plexus cyst that isn’t a problem on its own, but in combination with everything else is a marker. I knew it! I first researched it after our 20 week ultrasound showed the cyst in his brain. I disregarded it because he had no heart problems...but something made it stick in my mind. I knew it! (we dont get the results from the autopsy and tests until 10th april, this is just my own research and opinion)

Since I worked this out yesterday I have felt a new peace. I read a few stories of parents who had Trisomy 18 babies. It sounds like me. One was saying how she didn’t feel hiccups and kicks like with her other pregnancies. How the baby’s movements were slight and faint. Something like 95% are miscarried and of the ones who survive, less than 10% of those make it to one year. Very, very few survive their childhood and if they do they have severe mental and physical problems. It is called “incompatible with life”.

Once I worked it out I felt such peace. I got up, actually put in my contact lenses for the first time in a week and a half, had a shower and got dressed. I’ve worn the same thing every day (when I’ve actually got out of my pyjamas) but I wore something different. I tidied up a little and actually put away the single bed I’ve been laying around on in the lounge room. Then I went and got Rory from After School Care. When I picked Kim up from the train station I excitedly told her about the Trisomy 18.

Sounds stupid to be excited but we both are. It means that with proper genetic tests we can prevent this ever happening again. It is rarely genetic, usually a fluke. Even if it is hereditary there is only a 25% chance of having a Trisomy baby again…meaning 75% of any of our embryos will be acceptable and pass the pre-implantation genetic testing.

When we got home I showed Kim the webpages I had found. Reading more and more of the ‘symptoms’ of Trisomy 18 it all makes sense to us. I actually think I will be disappointed if its NOT the answer we get.
If it was Trisomy 18 he never would have lived. And we had the best possible outcome. Had we been told at 18 weeks I would have had to choose to either terminate and deliver the baby, or carry him to term, knowing he would die shortly before or after birth. I would not have enjoyed the months of pregnancy. And I would not have terminated on the slight chance he might be okay. So in the end, he passed peacefully in the safest warmest place, we never had to make a choice and we got to enjoy every minute we had with him.


Stacey said...

That is so reassuring. It makes sense and you're right, he passed peacefully rather than being born and suffering only to pass away. I hope you get the answers you are looking for. Glad to see you're holding up--still thinking of you and wishing your family all the best.

Kristi said...

YAY! I'm so glad that you posted this. Well, not "yay" but a sigh of relief. When I fist saw Caden's photos that was my very first thought. Not because I've had a baby with Trisomy but with my first DS I had a positive AFP screen and drove myself batty researching all the possibilities so I've seen all the markers. It sounds strange but I know you'll understand why, I was actually a bit disappointed to see that Eli didn't have any physical markers for anything. I'm so glad that you are feeling some peace!

Malifacent said...

I lurked for months on the 3rd Tri board and have been following your blog as well. I can't imagine the pain you've had to bear over the past couple weeks but I am glad you may have found an answer. I certainly hope, for a multitude of reasons, that your findings are correct and they verify what it is you already believe. The story about Rory finding Caden a toy was so beautiful and precious. He is a great big brother, always. You and your family are in my thoughts.


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