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.