Decisions

Held in the tranquility of our weekend away, DH and I reached the decision that, if we proceed with egg donation, we will use an anonymous donor instead of my sister. I don’t feel like going into a massive family history, but we concluded that it would be much easier to go with an anonymous (or semi-anonymous) donor. Much less drama and fraught tensions. My sister has been sweet and supportive, but sharing a 12.5% genetic link with a half-sister doesn’t seem worth the extra aggravation from the rest of the family.

What I want — my own bio child, created in love, not a petri dish — seems unlikely to ever happen. As long as I have at least one experience of pregnancy and childbirth, I will be happy adopting all my other children.  Genetics don’t matter so much to me — although DH and I are still mourning the possibility of never having a child together.  Not even via a petri dish.

But my sister’s generosity has opened our hearts to the idea that proceeding with an egg donor is actually okay.  And that’s a pretty big hurdle she’s helped us overcome.

♥

Yesterday, we met with Dr. D, our RE, to discuss the next steps in light of the genetic news, and possibly moving forward with egg donation.  To our surprise, Dr. D didn’t seem to think the results automatically meant egg donation.  The lab that his clinic uses, Reprogenetics, is one of the best in the world and could — wait for it — design a special probe especially for my DNA. Oh, Brave New World!

To recap, standard PGD (pre-implantation genetic diagnosis) only counts the number of chromosomes, which wouldn’t help us because I have a normal number chromosomes. There is a more specialised version of PGD called micro array CGH which would detect structural abnormalities of the chromosome.  That has a 95% accuracy rate of detecting my chromosome inversion in a blastocyst. The idea of using a specially designed probe would be to improve upon the accuracy rate.  I know 95% sounds pretty good, but when you’re dealing with the possibility of having a child with such devastating deformities and disabilities as Recombinant 8 Syndrome, that 95% would only drop us down to a 5% chance. To put this into perspective, people (understandably) freak out when they learn that the chance of their having a child with Down’s Syndrome goes from a typical 0.25% chance to a 0.5% chance. A 5% chance is ten times the risk.  It’s not to be fucked around with.  It’s one thing to conceive naturally and be faced with tough amniocentesis results: terminate the pregnancy at 16 weeks, or have a child who will suffer for his or her short life.  DH and I are philosophical that, were we to conceive naturally we would cross that bridge when we come to it.  But to go through the huge cost of IVF for the privilege of making such a heart-breaking decision… it doesn’t seem worth the risk.

 So, in a process called Fluorescence in situ Hybridization (or “FISH”), based on a sample of my blood, the probe would seek out the two break points in my chromosome between which the inversion happens, and apply this data to my eggs.  Such a probe would hopefully improve upon the 95% accuracy of micro array CGH. We are in touch with someone at Reprogenetics and hope to find out how much this probe would cost (we’re ballparking $8,000), how accurate it would be, and how long it would take to design.

Most striking, though, was the fact that Dr. D said every pregnancy has a 5% risks of birth defects. That would include simpler defects like a clubbed foot or a cleft palate (relatively easy to fix) along with serious things like Cystic Fibrosis and Recombinant 8.  It certainly put things into perspective for us and made us more hopeful that IVF with my own eggs might work. Then again, I have few eggs left, relatively speaking. I don’t have that many to play with.

So for now, we are pursuing parallel tracks of the Brave New World IVF with my eggs as well as with an egg donor. We are still collecting information and can’t make a decision for a while yet, but it looks like Brave New World IVF (BNW-IVF) will cost the same as Donor Egg IVF (DEIVF), so I’m leaning towards trying BNW-IVF. That way, if it fails, I’ll at least never be left wondering What if I’d tried? In the meantime, I have my saline ultrasound scheduled for tomorrow morning (assuming my period has ended) and my HSG scheduled for this Monday 14th.

♥

Worryingly, Aunt Flo arrived out of the blue on Monday–I wasn’t expecting her to show until the end of the week.  When I asked Dr. D if it was possible that it arrived early due to two bouts of jetlag, sickness in London, a funeral, and receiving Very Bad News Indeed, he shook his head.  In his opinion, stress would lengthen a cycle — my shorter cycle is a symptom of DOR.  Madame Menopause is on the horizon. I’m trying not to freak out.  I’m so glad I have my first in-person, peer-led infertility support group meeting tonight!

P.S. I owe so many of you an email. I haven’t forgotten about you, even if it’s been over a month since you sent it. Just want to say, thank you for all your support. I’ll respond as soon as I can. Love you guys!