The Rainbow Connection

One thing that I learned after Harper's passing was that babies born after a stillbirth, miscarriage, or infant loss are called "rainbow babies." Support groups, blogs, and discussion boards about life after losing a child are full of phrases like, "Praying for a rainbow" or "Welcoming our rainbow on X/X/2013."

I love this analogy, the idea that something wondrous and beautiful can come after a storm. It seems a perfect description of a new life after the unthinkable loss of a baby. And really, who doesn't love rainbows? Gay rights, Kermit the Frog, pot of gold, Wizard of Oz - all positive associations!

My new evening obsession is reading discussion boards about women trying to conceive after a loss, particularly boards about those who, like me, are genetic carriers for nasty conditions.

These boards are an alphabet soup of acronyms, likely familiar to anyone who has experienced fertility issues. IVF. PGD. TTC. BFP. CVS. D&C. TFMR. AF. DPO. HPT. RE.

I have become totally addicted. I inwardly cheer when I read posts labeled "Baby is healthy!" or "Good news!!" or "Our rainbow is here!" or "CVS in negative!" I tense in sympathy for "The wait for results is killing me" or "Had CVS today, the waiting begins." And I want to give hugs of understanding to "Bad news" or "I miss her so much today."

Last week, Lou and I visited a fertility specialist. When you are carriers of a fatal genetic disorder, the surest path to ensuring healthy embyros is pre-implantation genetic diagnosis (PGD) combined with IVF. Right after Harper's birth, and even more so after her death, I couldn't conceive (if you'll pardon the pun!) of any other pathway to another child. The risk of going through the pain of loss seemed too great, too unthinkable to take the risk.

But our thinking has changed a great deal in the past month. And the visit to the fertility specialist confirmed for us where we'd begun to lean. For another child, we would take our chances and try to conceive (or TTC in internet lingo) naturally. After all, we have a 75% chance of an SLOS-free child, and we can test for that via a CVS at 10-12 weeks.

And if the baby does have SLOS? TFMR. Termination for medical reasons.

"Are you sure?" Lou asks. "Can you really handle the stress of waiting for results? Handle already being pregnant?"

An unanswerable question. I'm beginning to get used to those. But having done a great deal of introspective consideration lately, and having spent a fair amount of time chatting with counseling professionals, I actually feel confident in our decision to forego high tech baby production.

IVF was what I used to do. I spent two years as an undergraduate and five years in graduate school running IVF cycle after IVF cycle. Primarily in cattle, granted, but the process is nearly identical.

I know too much. And every single step of the process (and whoa, boy, are there a lot of steps!) would be a  sickening freefall on the emotional rollercoaster. Not that I'm fooling myself into thinking that the weeks waiting for genetic test results and the process of actively terminating a pregnancy will be easy, but it's at least limited to a shorter time period.

TFMR is my least favorite acronym and the one associated with many of the most heartbreaking stories. In some ways, for us, the decision is... not easy, exactly, because easy is a totally wrong word for something incredibly difficult and painful, but more black and white. Although we haven't gotten the final sequencing results of our SLOS mutations, from everything Dr. Porter has told us, based on Harper's test results and our  genetic backgrounds, we are likely to be carriers of common and very severe mutations. Which means any SLOS affected child we might have is highly likely to end up with a terminal condition, like Harper, assuming they make it to birth at all, which is extremely unlikely. So terminating, horrible as it would be to go through, is just hastening a process that would already be well underway.

I prefer to focus on the 75% chance everything will be OK. I like our odds.

All of this has given me new found empathy for friends and family members who have struggled with fertility problems. Not that I pretend to understand their pain. But in looking at pictures of newborn babies on Facebook, seeing parents out with their Snap N'Go strollers, hearing about pregnancy announcements, or seeing swollen bellies, I now know it is possible to feel both heartfelt joy and happiness for those that you love while feeling heartbreaking sadness and envy for yourself. Completely simultaneously. I imagine that emotional dichotomy is, like the acronyms, something anyone with fertility issues is all too familiar with.

In the meantime, I will try to dream about rainbows.