Congratulations

So many people assume that a positive pregnancy test leads to a baby. It surprises me how many people tell people they’re pregnant at only 6-8 weeks. I get telling family and close friends. I will likely be telling a few close people if we get pregnant again if only because I’ll need the support. But, telling acquaintances on the playground? Not gonna ever be me.

Of course, I assume even people who know about miscarriages and other pregnancy loss still say congrats to those who tell about pregnancy early? I do, holding my tongue all the while that so much could go wrong in the next weeks or beyond. I say congrats because of course I wish them well not ill with their pregnancy experience. Because in that moment they’re happy, and why should I take that from them. Because if later they have to then share a loss, I’ll whole-hardheartedly say I’m sorry and share my stories. Because very likely they are in that number who do not really understand that at least 1/5 pregnancies (possibly 1/4) end in a miscarriage.

Congratulations was a big part of why we didn’t want to tell everyone about our pregnancy. I’m sure there are many acquaintances that still don’t know. I just couldn’t stand the dozens and dozens of happy congratulations on facebook when we knew there was a 50/50 chance our son had a lethal condition. I just couldn’t stand all that happy when we were possibly facing the exact opposite. So instead we told only family and closer friends. It limited the congrats, and we knew these were people who would support us if the worst happened.

Right now congrats are something I really don’t want if we get pregnant again. I know even if everything looks good I will be a wreak for that first half of pregnancy, possibly even the whole thing. So I don’t want congrats, not from friends, or family or even our very positive OB. I will thus have to likely preface every telling that we’re pregnant with “no congrats, please, I mean it.” And then repeat when people still say it, possibly more than once to those that just don’t get it.

Journaling

During my first 2 pregnancies I was much more into keeping journals. At the time of my first pregnancy, which ended in a miscarriage, I was keeping a journal about our adventures in Japan, where we lived at the time. So, I started one for my pregnancy too. I later got rid of that short journal because all those dashed hopes and my ignorance about pregnancy loss hurt too much.

I eventually started a journal for the pregnancy of my daughter and then her infancy. I did not really start it until after I was 13 week pregnancy. After we knew the pregnancy was healthy and we thought that we might actually have a successful pregnancy and become parents. Sometime in the business of parenthood after my daughter got mobile I just didn’t have time to keep up with the journaling.

I need to pick it back up. A quick daily note each day on things good, bad and otherwise may really help. While I know this blog in many ways works as a journal too, these posts are longer, more well thought out and written. I need someplace to just put down my visceral thoughts for the day, or the day before.

What the future holds or does not.

Will I ever hold another newborn of my own in my arms? Will I ever again feel bubbling movements turn into kicks? Will I ever again be able to feel and see a child grow inside me again?

It’s the hormones and emotions thinking all this. There is a chance, and likely a good one, that I will be able to get those again. I certainly hope there is. I hope I will get pregnant again, and I hope that it will not be another loss. Not that likelihoods quiet my doubts.

We do want to try again. We wanted our son we lost and his existence has convinced me I’d like a second child. I hate the months of waiting to try again and then possibly many months of trying ahead to get pregnant. We’re squeezed between getting too old to risk pregnancy and my husband’s next assignment being one that will have him away a lot. It will give us roughly a year to try and hope and accept what happens at the end.

If we do get pregnant again, those months of waiting and trying will increase the odds that I deliver and we become a family of 4 while my husband is away. I hope not, but I have no idea what next year may bring. Being on my own does not bother me as much as all my husband will miss out on if that happens. All those lasts I so want with a second child may be things my husband sees only in pictures and videos.

If we can have a second child, our children will not be especially close in age. I will never be that person with a toddler and a baby. My daughter will be at least 3, possibly 4. She’ll be just as awesome a big sister. My own brother is 8 years younger and I know that those years don’t lessen a sibling relationship, especially as you get older. And if anyone ever wonders why the age separation or worst makes a bad comment about it, they will get the truth about the lost child in between. The sibling my daughter does not currently know about and will never meet.

Possibly our hopes will not be answered, and our fate will be three pregnancies and 1 child, or worst 3 lost pregnancies. I have a usual trying 2 year old. She’s also brilliant, adorable, busy and strong. Right now the thought she may be our only living child breaks my heart. But I know she is all we need to be happy. She alone was enough and can be enough to complete our family.

If that happens and we get comments on “why only one,” or that “one is easier,” I”m sure my reply will not be nice. It’s my current anger speaking that, but said person will still likely get a reply about our lost son and fate not having another child in our cards. One would hope it will shame them had their comment been unkind. Besides it not being anyone’s business one never does know why a couple has only 1 child.

Life is a journey. It has been up to this point and it will continue to be. It completely sucks that what happened and all the pain and loss it bought has to be part of our journey. I have to have faith that the journey will continue to take us where it should, whatever it might bring.

Where my 2016 has gone so far: Lethal prenatal diagnosis and choices

Early this last December we found out that we were pregnant, which was a very much wanted thing to expand our family. Having had a previous miscarriage before our daughter we did not announce it, even to friends and close family. I really hate those first months of pregnancy where you feel nauseous and hungry and exhausted, anxious and worried and not really wanting to share what could become great news. I thought about posting here, but I have this thing that I’d like the first people to know about us being pregnant to be family, so I did not. I would have loved that subject to have been my first blog post about my pregnancy.

At 12 weeks when I was tired of trying to fit into normal clothes and worried someone would recognize I was wearing maternity clothing, we told family and then a few close local friends. We’d had our first OB appointment and the baby looked fine, I was healthy, it seemed the time to tell people.

Then, at 13 weeks I got a phone call on a screening test we’d done. Our OB had told us about a new blood based test to do early screening for chromosomal problems. The test was very accurate, especially for trisomy 21 Down Syndrome and was covered under our insurance, so a good test to take away worries. The results, however, came back showing a risk for trisomy 13. About all I knew about it from biology classes was that any autosomal trisomy except 21 was bad. A quick search and I found that essentially it was lethal, and that was likely the moment my heart broke.

But, this was only a screening test, one of which I can now tell you a great deal about from procedure to accuracy. Trisomy 13 also very rather rare, 1/10,00 to 1/16,000 live births. So, a false positive was rare, but so was the chance fetus actually had the problem. After our meeting with a genetic counselor a week later we found out it was likely a 50:50 chance the test was correct. So we hoped for the best. We also had to wait until 16 weeks to do an amniocentesis, which would give us a true diagnosis of our son.

Much waiting and reading up on trisomy 13 ensued. All we knew is there was a risk, so we mainly worried in silence, instead of facing tons of questions we had limited or no answers to. We did an early ultrasound at 16 weeks with the amniocentesis. The findings were incomplete because of the age and inconclusive, only a few “soft” markers of a chromosomal problem were found, although the heart and brain (which these children have major problems with) could not be determined healthy or not. Of course, me and my husband are both scientists and usually the simplest explanation of facts is the best, meaning the screening results and soft markers together leaned towards trisomy 13 or at least another problem with chromosome 13. But, it’s impossible to not be hopeful, to not wish for a healthy baby, to not hear that the few problems they had seen were mere coincidence.

At 18 weeks we got the final diagnosis of full trisomy 13. This did not come as a surprise, or shock. In many ways we’d been dealing mentally with getting this result for 5 weeks and just hoping we wouldn’t. I could likely write a cited review paper on trisomy 13 problems and survival. The diagnosis was not a prognosis, however, the short version of my research was that 80% are either miscarried or stillborn, another 10% will die in the first few days or weeks of life, a possible 5% to 10% make it to one year of age, but later die in childhood. They all have multiple medical problems, many severe, and severe developmental delays.

The decision to end the pregnancy was likely the hardest we’ve ever made. But faced with the facts, the statistics, the truth of how hard continuing the pregnancy would be knowing the possible outcome, it was the only choice that made sense in the end. So days shy of what would have been 20 weeks, we said goodbye to our son, who was very much wanted, dearly loved and will be truly missed.