I am so sick of people asking me if I am alright. What the fuck could I possibly be “alright” about????

I’m 23 weeks today. Nudge has been kicking a lot today, which is killing me slowly. I love every little nudge and bump but each one reminds me of the baby I will never know. While other expectant mothers are deciding on which stroller to buy, we’re getting quotes for burial plots.

I have to write a birth plan. This is proving harder than I expected. I need to include the normal things about pain relief and medical interventions but I also need to specify our wishes regarding resuscitation and a delivery room baptism*.

And I need to find out if it’s ok for me to specify in the birth plan that I am the only person to bathe him. I don’t want anyone to do it; it might be the only bath he has and I want to do it. I also need to find an outfit for him. Again it’s the only set of clothing that I will ever get to choose for him and I want it to be right. There is so much I will never get to do for my little boy and it kills me that I’m struggling to find the right clothes for him. Why is this so hard???

My poor beautiful little Max was cremated in the clothes provided by the hospital volunteers. The knitted hat was acrylic and miles too big for him, and the little dress, while it was mostly blue on white, also had some pink in the pattern. I desperately wanted to make something more suitable for him but there was no time. I don’t want to find myself in the same position and I’ve been warned that I could essentially go into labour at any time. But how do you choose an outfit for a baby that might weigh 600g (if born now) or 2-3kg if born closer to or at full-term?

Something happened last week that really pushed me over the edge and I’ve been in a dreadful funk since. This guy in his late twenties is being treated with a cytotoxic medication for his medical condition. He was warned many months ago to use two forms of birth control (ideally the pill and condoms) because the risk of birth defects, etc is high with this particular drug. He had been seeing his girlfriend for about eight weeks when she fell pregnant. He told the nurses back then that he didn’t love the girl, didn’t want to be a father, didn’t think he should have to be financially responsible (just as well he doesn’t have a job then, huh??) but was yet to decide what to do about the unwanted pregnancy. Weeks go by and he consults the Mother Safe service regarding the medication and possible birth defects. He admits to them that he is a regular pot smoker (but apparently it’s ok if it’s for “pain relief”). Tests are done and the baby appears to be fine. She’s now 18 weeks pregnant with a baby that neither of them particularly want, and they aren’t seeing each other anymore. But they’re going to be parents. And to date, their baby is perfectly healthy. Meanwhile my husband and I have been together for most of eight years, we don’t take drugs, we very rarely drink alcohol (he more than me and that’s barely 1 standard drink per week), I take vitamins, I eat well, I watch what I eat and maintain a healthy weight (pre-preg BMI = 23), we both have good jobs and can provide for, AND would dearly love to have children. But we’re the ones that get shafted.

IT’S NOT FAIR!!!!!!!!!!!

I’m so over this shit. I just want to scream at everyone.  I want to break everything.  I want the junkie mothers-to-be that line up in front of the methadone clinic every morning to lose their babies instead.  I just want to wake up and realise this was all just a horrible dream.

*I do not believe in God but it’s for my husband. He is still deluded enough to believe that our babies’ deaths are part of a master plan. What a fucking crock.

We saw the geneticist again this morning.  Straight away she said that it is really extremely rare for recurrent bilateral renal agenesis and this concerns her.  She said that the first thing to keep in mind is that we are making a BIG assumption with Max regarding his diagnosis because a post mortem was never actually done.  You might recall that the hospital had told us that it would take six months for post mortem to be completed and I didn’t think I could handle knowing my baby was sitting in a fridge somewhere for that length of time.  The compromise was that the hospital ordered genetic testing on a tissue sample but that sample became contaminated and in the end we were left with the diagnosis of bilateral renal agenesis based purely on ultrasound evidence alone.  But I digress. 

So, presuming there wasn’t another genetic problem at play, and that it was just straight up renal agenesis, then it was very reasonable to give a conservative risk of 3% recurrence (meaning it should actually be far less than that).  The fact that it did actually reoccur means that either we’re one of the very few couples in the world that have had actual true recurrent bilateral renal agenesis that wasn’t caused by some type of genetic disorder (in other words “bad luck”).  She briefly discussed future odds being “possibly one in four” but given that we’ve had two already, she felt the odds could even be worse but she was quick to say that she’s not happy to offer this type of future risk to us when it is based on a pretty big assumption (Max) and therefore really is little more than best guess rather than anything scientific. 

So… as we stand right now, she has ordered some more genetic tests on the husband and I (blood tests) to check that our chromosomes, while “normal” don’t contain any muddled info. I didn’t fully understand this part of what she said but I *think* she’s looking for a translocation. Now I really I thought all of this was done previously but apparently it’s a newer, less commonly ordered genetic test.  While this is a very mega-crazy-big long shot, it gives us something to do now and it would be “good” to find a translocation in one of us because she said it would be something that can be picked up by pre-implantation genetic diagnosis (PGD) which is where the IVF clinic genetically tests the embryo and rejects any with that genetic error.  While it’s such a long shot, it’s what we are “hoping” for because it’s something we can test for and (somewhat) control. 

Beyond that blood test, she can’t do much for us until she has more information which can only come from a post mortem. This will tell us if there is true renal agenesis, or if there are kidneys that just failed to fully form or completely develop, or even something else that might include bilateral renal agenesis as a symptom such as branchiootorenal (BOR) syndrome or a number of other genetic disorders that she didn’t name.  She did say that she would check to see if any of Nudge’s genetic material was kept from the CVS that might be suitable for testing but she did say that they need a substantial amount of tissue and the CVS doesn’t normally yield this. However, the CVS is normally done by 12 weeks and mine was done at 20 so maybe there was enough material.  Either way, she said she would contact that hospital and have them check.  She has also agreed to contact the geneticists at the hospital where we’re due to deliver so they will do what needs to be done when Nudge is born.  Mostly that’s a visual external assessment by the geneticist prior to the post mortem.  She did warn us that a year ago (when Max was born), the fetal post mortems were taking up to six months but now it’s substantially faster, though we could possibly wait up to a month before baby is returned to us for burial.

Overall, we don’t know where this leaves us in the future.  The full report from the post mortem can take in excess of six months which means either trying again as soon as possible (which would be before the report is released) and hoping that we get lucky next time or we stop TTC altogether and wait for the doctors to find something to test for genetically that is compatible with PGD as well.  The thing I don’t like about waiting is that there is absolutely no guarantee that the doctors will find anything at all.  Maybe we are just one of the few couples in the world to have actual bonafid recurrent bilateral renal agenesis. Or maybe we’re just not suppose to be parents.

I’m now 22+4 wks which means that if I can get to full term, there’s 122 days left. I’m told that it’s unlikely that I will get to full term which means there’s an unknown and probably lesser amount of time to figure out what the hell we’re going to do once he arrives. I’ve been going through price lists for burial plots, and am now trying to find a pattern for a suitable christening/burial gown.

I cannot believe this is happening to us again.