Perhaps I ate too much at my birthday dinner the night before, no?
***
I'm reading a good book. It's fictional but it has some really moving passages. One of the characters says this about dreams which I thought was very appropriate given the above.
"A dream is the place where a wish and a fear meet. When the wish and the fear are exactly the same, we call the dream a nightmare."
***
I troll the internet every few months using the search word "Breus mole". I feel a bit like someone routinely checking up on the convicted murderer who killed their family member. Just checking in on you Breus Mole. Just want to make sure some researcher somewhere is still keeping tabs. Finding out exactly what makes you tick. Don't think you can get away with it forever...
It was during one of these searches that I came across an abstract for a presentation by a doctor from the hospital where I received care during both of my pregnancies. The title of his presentation was "Prenatal Diagnosis and Clinical Outcomes in Pregnancies Complicated by Breus’ Mole". The presentation was 15 minutes long and given during the annual research day on May 4th of 2012.
Since that was just this past year, they were talking about me.
Not only me, of course, but that someone out there was using my experience for research got me all fired up. My immediate reaction was "Why was I not invited to this presentation??!! I want to know exactly what's going on??!!" So I wrote an e-mail to Dr. K., the placental specialist who saw me during my pregnancies and diagnosed the Breus mole in both cases. The guy is a research nut and I knew he would be happy to share his team's findings.
He wrote me back (in blue). My (mental) responses are in bold.
(Our hospital) has the largest experience now of Breus’ mole (16 cases)
16 cases is the LARGEST experience of any high risk pregnancy centre???..and this is counting me TWICE!!! What a way to make a girl feel special.
- Only one (you) person has a recurrence – that we are aware of. Obviously it is because I am awesome and rare like a unicorn.
- We have followed 5 subsequent pregnancies (approx, I don’t have data in front of me) and most are fine and we can decide this accurately at 20 weeks. Would this include my subsequent pregnancy? Cuz if so, it totally was NOT fine at 20 weeks.
- There is no genetic test yet for the condition, but deleting one specific gene in mice (Wnt2) gives a picture like Breus’ mole. Cool, but unhelpful unless you can check me, Brian and any of our offspring for this particular genetic mutation (and I'd totally be willing to let you).
- Survival of the baby is possible in about 35-45%, as in your situation. Um...not exactly what one wants to hear about the survival rate of their baby. But, I suppose it's better than the 0% chance that Dr. S. gave for Kaia's likely survival when my water broke at 17 weeks.
After reading his e-mail 3 or 4 times, I can safely say that no where did Dr. K. promise that any subsequent pregnancy we try for now would TOTALLY end up okay and healthy and happy and full of rainbows and butterflies. I'm also sorry to say that he did not add that NO WAY could I have a 3rd Breus mole...like NO WAY. I'm self-aware enough to realize my dead baby broken heart would really like a guarantee of normal, healthy pregnancy, so I wouldn't feel so guilty, selfish and anxiety filled (Russian roulette anyone?) if we decide to try for another child. I'm also rational enough to realize I'm not going to get it, and that we will have to make our decision based only the information we have now (which is basically a *shrug* and is not helpful at all).
I am not a person who likes to gamble. I never buy lottery tickets and I would consider it a waste of time and money to go to Vegas (except for the reportedly awesome shows!!!) I am also not a person who just settles when told something *might* be out of reach, especially if it's something I really want. To do so seems sad and wasteful. You never know until you try, right?
I feel like we got a pass from the universe with Kaia...might it be too much to ask for another one?
I feel like we got a pass from the universe with Kaia...might it be too much to ask for another one?
***
For Halloween Kaia is going to be a unicorn. My special, adorable rare little unicorn.
It must have felt strange to come across that presentation and know that it was you they were talking about. Also that you didn't know until know. I woukd expect to be notified if my case was being used for something like this.
ReplyDeleteI wish that dr. K's response had been more encouraging,
Perfect costume for Kaia. I can't wait to see her in it,
"Obviously it is because I am awesome and rare like a unicorn", I actually LOL's at this line. :)
ReplyDeleteI think, for some physicians, letting you know it a recurrence hasn't happened (other than you) is about as much positive feedback he can give you. Because before you, he would have said "we've never seen a case of the mole recurring", and then, BAM, it does.
I love that Kaia is going to be a unicorn. Grace is a purple butterfly, a yellow flower, possibly a pink zebra and (finally, and most heartbreaking of all) a SK doctor complete with scrubs and a stethoscope. :/
As Dana says, that must have been a very strange feeling. To see that presentation and know that they were discussing you. It does seem weird that they don't have to inform you but I remember signing bits of paper giving researchers access to J's medical records whilst I was in a bit of a state. So I guess she is part of some research cohort somewhere?
ReplyDeleteYour description of your pregnancy dream made me cry. It was the bit where you said "this is so cool" because I know I would have thought that if my first pregnancy hadn't gone quite so badly and I was so frightened during my second one that I honestly feel, now, like I imagined or dreamt both of my pregnancies. And even the 'good' bits of my subsequent pregnancy have taken on a nightmarish quality, because I was wishing so hard and I was so afraid and there was nothing at all that I could to to help.
And I wouldn't say that me and my girl are unicorns, we aren't a patch on you and Kaia. But we aren't quite run of the mill either. Maybe something like pandas. We do exist, there just aren't so many of us. And I still want that elusive dream (even though I had it already in a way, obviously I'm just exceptionally greedy!) but I want a pregnancy where I am happy and enjoy it and I'm not afraid. Because those first 23 weeks with the twins were the happiest of my life and I want to feel that again. And that isn't going to happen. But something in me keeps chasing it.
I just wish that there was a way that you could know what the chance of this happening a third time would be. Ideally 100% in the direction of 'no' but, sadly, that isn't the nature of biology and that sucks.
I'm kinda glad that you are keeping an eye on the Breus Mole. Because he's got a lot to answer for. I hope that Dr. K keeps on researching him and finds out what makes this nasty piece of work tick.
Hope that Kaia enjoys her Halloween, her costume is exactly right xo
So much research, so many doctors studying our various conditions, and still it seems impossible for any of them to give us any "for sure" information about whether or not things will be okay next time. Or, as I recently heard someone say, "obstetrics - the only medical field with less concrete evidence than psychiatry."
ReplyDeleteAnd SO weird that they did a presentation on you and never told you! I was in a medical textbook as a child because my parents let the doctors perform experimental surgery on my (nonhereditary) birth defect. Which was also weird to learn about, though I imagine less so.
Just catching up on a lot of posts... and I too love the unicorn line- you are a gem! No advice to offer- but always here to bear witness as you make decisions.. love and light my friend...
ReplyDelete