The worst day of our lives.

I’ve had bad days in my life. Depression will do that to you. I can catastrophize with the best of them.

This was not one of those days.

One of the things that I knew about my wife from before the time we got married was that she wanted four children. I, on the other hand, wanted two. I’m the eldest of three, and I know how that plays out. We had ‘J’ 15 months after we got married, ‘E’ came along a bit over three years after that. Eventually, I changed my mind, and our daughter ‘B’ was born just before Christmas in 2003.

As far as I was concerned, three was it. We moved to Melbourne in 2005, I bought a Commodore sedan (“Big Red” as the kids call it) which seats a total of five people, and we settled into our new life here. Tan still wanted four kids, but I stonewalled. Between dealing with the depression, and our aspie kid(s)… No way. No how. No room in the car for another one.

A few months ago, I changed my mind. Several reasons behind it, but the summary is that I did change my mind, and we decided that for us, four would be a magic number. My depression is largely under control. We’ve worked out (mostly) how to manage the ASD stuff. The kids were all very excited, and Tan was over the moon. We started preparing emotionally, and Tan started taking folic acid tablets. Doctors recommend taking folic acid to reduce the instances of neural tube defects. After Tan fell pregnant, we saw our doctor, and she discussed having an amniocentesis test for birth defects. Tan and I had already had the discussion, several times over the past fifteen years, and we still feel the same way. If our child was born with any of the defects they can detect with an amnio, such as Downs Syndrome, we’d find a way to make it work.

We decided that we wouldn’t tell anyone we were trying until we knew we were pregnant, and not until we’d reached the end of the first trimester; statistically, if you make it to twelve weeks without a miscarriage, then the likelihood of a miscarriage is fairly low. We knew what it was like to tell people about your pregnancy and then have to explain that you’d lost the baby; between J & E, we had a miscarriage at 9 weeks.

I’m not good at keeping secrets. As it turns out, neither is Tan. I let it slip to a couple of people; and a few of Tan’s friends worked it out without her having to say anything. According to the doctor, Friday the 5th of November was the 12 week mark, and we were having the ultrasound on Tuesday afternoon.

We’ve been pretty excited, and I couldn’t help myself. Tan agreed, so on Thursday night we called her parents, then we called mine, then the rest of our family. On Saturday we made the news public on Facebook and Twitter.

I left work early yesterday, and made it to the Women’s health centre with two minutes to spare. Tan had to bring B with her, and soon the three of us sat in the quiet dusk of the ultrasound room. We were all excited at the idea of the first glimpse of our new arrival. Pleasantries were exchanged and the ultrasound commenced.

After a few minutes the technician let us know that we were at twelve weeks and six days gestation. The next thing she said made my blood run cold.

“I need to tell you something, but I don’t want to tell you with your daughter in the room.” We asked B to go and play in the play area, which she happily did, and the door closed quietly behind her.

“There’s no easy way to say this, so I’ll be direct. Your baby has an extremely rare birth defect called ‘acrania’.” She then went on to explain to us what this means. By ten to eleven weeks a baby’s facial bones and skull have developed to the point that they appear as white areas on an ultrasound.

Acrania is a neural tube defect which causes the baby’s skull not to develop; in our case the skull and meninges are non-existent. On the ultrasound the technician showed us where the baby’s brain matter is directly exposed to the amniotic fluid, and that the brains are free floating with nothing to enclose them. I apologise for the graphic description, but the way it was described to us is that between the exposure to the amniotic fluid, and with nothing to protect the brain from the wall of the uterus, the baby’s brain is effectively “worn down”. There’s already areas of the baby’s brain visibly showing damage.

According to the literature, acrania is 100% fatal. You cannot survive without your skull. If Tan successfully carries the baby to term (and we’ve been told that there’s no immediate reason to think she will miscarry), our baby will die, likely within a few hours.

Having seen the development of my three children through their ultrasounds, and as they’ve grown, I’ve struggled with the idea of abortion, particularly as birth control. For well over a decade now I’ve described myself as “pragmatically pro-life”; I had a conversation many years ago with a Christian friend who found herself in an impossible “either the baby will die, or you both will die” position – it led me to the conclusion that as with many things in life, not everything is simply black and white. As much as I personally wish it wasn’t, I’ve felt that sometimes there are cases where abortion is sadly the best of a terrible set of options. I’ve made no secret of this over the years. I’ve been smacked around by pro-life and pro-choice proponents; I very rarely discuss it with people the days, because it’s not a conversation that ends well. I long ago stopped judging people who made this choice. They carry enough of a burden already without me adding to it.

Now we find ourselves facing that impossible set of choices.

This is our precious dearly-wanted daughter. We’ve spent the past twenty four hours in agony over what to do. While I say I’m “pragmatically pro-life”, and I would completely understand someone choosing termination in a situation like this, it’s not someone else facing this decision, it’s us. I’ve seen her moving around, her tiny little legs and arms. I don’t know that I can choose to end her life in that way. The alternative is for Tan to carry her to term. In six months or less, she will enter the world, and we will have to watch her die. We’ll still be choosing to end her life, because there’s no point to resuscitation. It doesn’t matter what we choose, we’re choosing death. From what I understand, we can’t even choose to give another baby life through organ donation; the process of our daughter’s death will cause damage to her organs making them unsuitable for transplant.

I know some of my friends believe that God can do amazing miracles. And truth be told I’ve had at least two experiences in my life that are inexplicable to me, and to those who experienced them. But right now, my faith is not strong enough to believe for a miracle. Some of my other friends believe there is no God. I respect why they’ve come to that conclusion, even if I don’t agree; right now, I can understand why. I don’t think I’ve beaten anyone over the head about faith for a long time now, and I’m not about to start again now.

For the record, I’m not interested in having a debate in the comments over the existence of God, or why I’m a Christian, or being pro-life or pro-choice. If you really feel the need to tell me that stuff, then come and see me and tell me in person, face to face. It’s all too easy to judge someone’s situation from afar – it’s a lot harder when you have to look them in the eye. If you really feel the need to “declare a miracle” then don’t do it in the comments. God will hear you wherever you say it. I can’t deal with reading that right now.

I need you to understand this. If we choose to terminate our daughter’s life now, we will have to live with that awful decision each and every day of the rest of our lives. We will have to live with the judgement of people in our community who can’t see past the end of their ideology. If we choose to go to term, it means that for up to six months that should be full of joy, the first flutter, the first kick, everything leading up to that joyful moment of birth are instead months of grief leading up to the birth, and the subsequent death of our daughter.

It doesn’t matter what we choose; there’s no happy ending, and our hearts are heavy and breaking.

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