I just joined a support group for third party reproduction and had to introduce myself. Thought I’d kill two birds with one stone by re-posting an expanded version here. It’ll explain what’s going on to long-time readers, but also bring new readers up to speed. Sorry for the long post. I considered breaking it up across two posts, but thought that would be confusing. So I’ve broken it into sections.
In August, I was diagnosed with Diminished Ovarian Reserve (AMH 0.17, FSH 12.3, E2 46, AFC 3+3) and it was recommended we proceed straight to IVF.
Tuesday 10th September
First consultation with IVF guru, Dr. D. Literally on the way, I learned my grandmother was in a coma and dying. That was weird: was she making way for new life? Due to my barely detectable AMH, Dr. D wanted my blood tested for Fragile X and general karyotyping.
Friday 13th September
I gave eight vials of blood, Aunt Flo showed, and my grandmother died. That was a fucking fun day.
Sunday 15th September
Flew to London. Although my dad knows about IVF, I vow not to tell my mum, step-dad, brother, as they are not likely to be able to give me the kind of support I need. I would feel okay telling my sister except that she’s only 21 and might feel uncomfortable knowing when the rest of her family does not. I plan to laugh off intrusive questions about acupuncture, diet, supplements, lack of alcohol and caffeine with This is what happens when you move to California…
Tuesday 17th September
My mother questions my new lifestyle but buys the “Gone Californian” spiel with a knowing roll of the eyes.
Wednesday 18th September
Out of the blue, prompted by nothing, my sister announces she’d like to be an egg donor for no other reason than she “would like to be able to help someone.” Somehow I managed not to lose my composure. When asked, I say, Yes, I know something about it because ahem a friend did it and explain that it would be a very invasive and time-consuming process. My mother thinks the idea of donating eggs to a stranger is ridiculous and says “Maybe you’d do it for your sister… But Laurie doesn’t need your eggs!” Oh how little ye know, mother… Because at that moment, I had the thought, This is too uncanny. This can only be the universe telling me I will need donor eggs.
Friday 20th September
Good news! DH’s sperm is fantastic! Phew, that’s a, er, load off our minds… Meet with the lovely Lisette of Project Sweet Pea who is funny, sensitive, and also curses like a sailor: I’m in excellent company! What is supposed to be lunch turns into a 6-hour-long conversation about the minefield that is loss and infertility. She is a much-needed outlet during a time when I have to keep my feelings in check, and it’s probably thanks to her that I am able to keep my shit together away from DH.
Tuesday 24th September
Grandmother’s funeral. Although I will miss her, I am not sad. I am philosophical. She lived a long and good life. That’s how it should be! I read a passage from the bible at the service and for the first time feel as though I am speaking to god directly as a non-believer. We celebrate her life. I kiss her coffin and whisper thank you. She’s left me enough money to pay for IVF. Gratitude and thanks don’t begin to sum it up. I feel so lucky, knowing that there are many couples who can’t afford IVF. This help from beyond the grave gives me goosebumps. It’s as though all along this IVF path is the one I should be walking, and I find comfort in that.
Wednesday 25th September
My bloodwork came back showing that I have an abnormal karyotype. But it is so rare there is almost no information online. We begin to parse data from complicated medical journals. Even DH, who has one of the most brilliant, academic minds I’ve ever known, is having a tough time figuring this shit out. (Of course he still remembers what he learned twenty years ago in high school biology so figures out quite a lot.)
Thursday 26th September
My mum’s birthday. She just lost her mum, so I put on the happy act of the century. This is probably helped by the fact that I met up with the lovely Sadie of My Invincible Spring. It is another great meeting with a fabulously interesting woman. It’s helpful to be able to share my bad news with someone who kindly listens. It gets it out of my system in time for my mum’s birthday dinner. I should probably get an Oscar for the performance I gave. But later, sitting cross-legged and alone late at night, I stare angrily at my thigh and, in a thick irrational cloud of rage and thin disbelief, try to scratch out my fucked up DNA. Three long red welts on the inside of my thigh that slowly become dark bruises that will remind me of my stupidity when they burn as I pull on my jeans the next morning.
Friday 27th September
Share my news of DOR, IVF, abnormal karyotype, and the possibility that it might make more sense to use donor eggs, with my mum and step-dad. They try to push adoption. I explain that adoption is something DH and I have always wanted to do anyway–we just thought it would be in addition to having a bio kid or two. That the experience of pregnancy and childbirth has always been important to me, but after my MMC, more so than ever. That pregnant bellies are still a huge grief trigger. That it was getting better until I kept getting blow after blow of devastating medical news. That carrying my child to term is, I feel, a huge part of my healing process. I also tell them that I will be going on a walk with my sister tomorrow to ask her to consider being an egg donor–if only to rule it out as an option. Mum and step-dad are side-blinded, shocked, but supportive.
Saturday 28th September
Go for a walk with my sister and tell the tale. When I get to the part about our possibly using donor eggs, she interrupts and volunteers to be our donor without my asking. I hug her and thank her, but ask her to think about it. I remind her of the IVF protocol, and how invasive the procedures are, and how disruptive it would be to her life. She just moved to London and would have to come to San Diego at least twice, once for 6 weeks minimum. She’s still on board. I spell out that genetically this would be her child with her brother-in-law and it might be weird. She says “it doesn’t have to be” then adds “it’s a beautiful thing.” I squeeze her hand and give her the letter I wrote that morning in which I remind her that it’s okay to say no, we still have options, that I love her whatever she decides. She reads the letter aloud and we laugh at how terrible my handwriting is. I look at this young woman, my baby sister whose diapers I changed, marvelling (and not for the first time) at what a big-hearted person she is. I am so grateful for my sister.
Monday 30th September
Fly home to San Diego. I have never been so glad to see DH.
Tuesday 1st October
Meeting with the genetic counsellor who confirmed everything DH pieced together. I sit weakly on the sofa trying to understand what she is saying. My mindfulness practice makes me realize I keep tuning out, a coping mechanism I developed as a child when my parents split up and which I haven’t used in almost a decade. At home, DH and I hold each other all afternoon between tears and sleep.
What This All Means
The good news is that almost all of my bloodwork came back normal and I am definitely female (XX) and have 46 chromosomes.
The bad news is that have a very rare genetic disorder–a pericentric inversion of chromosome 8. In layman’s language, as I understand it, this means that a large part of middle section of my chromosome (the 8th largest) is flipped 180 degrees between two break points. So, instead of the chromosome reading ABCDEFG, it reads A-FEDCB-G.
This means I am likely to miscarry over and over and over again. If I did manage to carry to term, such a baby would be severely mentally and physically disabled. Due to my 8th chromosome, they would either have duplications or deletions of genetic material, resulting in something called Recombinant 8 Syndrome. Symptoms include having IQ of 30-70, major heart defects requiring multiple surgeries, bones fusing so the child would never walk. Such children didn’t live past the age of six until 20 years ago. Currently only 50 known families worldwide have the gene. No one in all the worldwide genetic literature has my specific break points. As I inherited this from one of my parents, and assuming two other family members have it too, I am literally one in two billion.
Unfortunately, standard Pre-implantation Genetic Diagnosis (PGD) can’t test for structural abnormalities, it can only count the number of chromosomes. If I were to proceed with IVF using my own eggs, we would have to do a highly specialized (and extremely expensive) form of PGD called micro-array CGH. Unfortunately, this doesn’t improve our odds of transferring a healthy embryo by very much. Potentially this means getting pregnant only to be faced with a horrific decision at 11 weeks (CVS) or 16 weeks (amniocentesis): raise a child who will suffer for his or her short life, or terminate the pregnancy. It would be a horrific decision to make if I were to get pregnant the old-fashioned way, but I’m not sure that’s a decision I want to pay somewhere in the region of $30,000 for.
So, we are probably going to proceed with DEIVF (Donor Egg IVF). Even though for the most part I am okay with having a baby that is not genetically connected to me, DH and I are both saddened that we will never have a genetic child together. I know it’s a loss we will get over quickly, though. I know there is so much more to being a parent than genetics. When we take out the emotions, tally up the cost and weigh the disadvantages to using my own eggs for a vastly reduced predicted success rate with a potentially devastating outcome, using an egg donor is a no-brainer. It’s about the same cost as the regular IVF plus all the extra micro-array testing and has a much higher 70% success rate. It really is a no-brainer.
Our question now is whether we use my sister or an anonymous donor. Both have their advantages and disadvantages, and we will learn more at our second, amended consultation with Dr. D on Tuesday. Technically, my sister is my half-sister. It would be nice to have some genetic link, even though it’s less than a “full” (I’ve always hated that term) sister. But she’s only 21 and lives in the UK with no US health insurance (which I guess she would need if something went wrong). I feel very conflicted about asking her to be ED. It’s not so much about the “weirdness” of having her and my husband’s baby (I got over that quickly) but… I changed her diapers. She’s my baby sister, the closest I’ve come to parenting. What if something goes wrong? What if her fertility is impaired or she gets OHSS? I’m terrified. After all the tiny statistics I keep falling into, I don’t think my fears are irrational. Maybe it’s better to use an anonymous donor who hasn’t been guilt-tripped (however unintentionally) into saying yes, even though that would be way more expensive, and our child wouldn’t definitely be able to know their roots, should that be important to him or her.
We have so much to think about it’s sometimes a welcome practical distraction from grief. So DH suggested we go away for the weekend. Although he’d never forgotten our undue date was October 5th, he hadn’t realized that it was tomorrow when he suggested we go away for the weekend. Coincidentally, the only hotel (we prefer the small independent boutique variety to large resorts) we could find in the whole Idyllwild / Palm Springs area at such short notice is called… Hope Springs.
Women before me have said that the build-up to the undue date is worse than the actual day itself. Honestly, I’m not convinced that will be the case for me. There aren’t many women who have kept getting devastating news on top of devastating news and so soon beforehand. I’ll never again be pregnant with our child conceived through making love. It’s hard to accept. I try not to will time travel back to February 8th, the day my Bean died. I don’t want to turn my back on my Bean, but I need to stop thinking about what would have been. Tomorrow is the last day I will do that. Tomorrow is the day I stop counting the weeks.
I am looking forward to escaping with my husband. I am looking forward to starting work on the memorial box I’ve been planning on making for my Bean and all the genetic babies I now know I will never have–a book I will hollow out to hold ultrasound photos, pregnancy tests, a Jizo… I am looking forward to literally and figuratively closing that particular chapter before embarking on the next. Yes, I am looking forward.
Hope Springs, here we come. Hope springs eternal.