Climas 2.0h no....

Sher, my wife, is pregnant and has been for the past 3 months. Tomorrow she won't be pregnant anymore. What was a joy has turned into bleakness. The baby that never was. The baby that didn't stand a chance. The pregnancy we had to end. This is not a terribly cheering posting. There are no happy endings to this story. I think it's rare you hear about the husband's perspective on these things. When a baby is lost, it's usually the mother who is the focus of attention and quite rightly so. The father will (hopefully) be supportive, solid, reassuring and loving during the time of tragedy; but he hurts all the same. This is my experience up to this point. I have no idea how I'll be tomorrow, that's for another posting.

Backstory!

Two weeks ago Sher had a nasty fall. She was trying to scan a document and our printer was at a height easily accessible to me, but not her. She used a chair to get at the printer and it shot out from under her. She fell, scraping most of her back along the edge of the desk and landed on her back on the floor. I got several calls on my mobile from her, clearly upset. I missed all of these calls. Fortunately she had called the school office and the word got out she wanted to speak to me. Within 5 minutes of being told by the first person, four others told me to call her. I did and promptly ran out of school (with permission), met her for a coffee and calmly proceeded to a doctors appointment. The doctor is a friend of Sher's and is very well respected within the community. Having said this, she's very feisty, and will push hard for her patients needs - something which is not always well received in a culture where loss of 'face' is taken so seriously, and people are generally expected to behave themselves, doing as they're told. Basically she's just the kind of doctor you want in your corner! It tells you a lot about Dr. Sally Ferguson that she came in after hours for us to do an ultrasound and check over Sher, I don't know many other doctors who would. 

The scan went well. She quickly found the heartbeat (huge sigh of relief) and showed us the baby as best she could. Bear in mind the baby was only 12 weeks at the time, we're not entirely sure because neither Sher nor I can remember the date of her last 'lady cycle', the fetus was only about 4cm long. This didn't tip us off at the time, but is sign that all wasn't as it should be. The baby should have been bigger. If Sher were 11 weeks, it would be less of an issue, but as we thought it she was 12 weeks it was a concern for Sally. The baby also had a round protrusion from it's belly, honestly it looked like a beer belly. Very round and very smooth. It was about the same size as the baby itself. Dr. Ferguson did highlight it, saying it may be something to be concerned about, but it may also go away in a week or more. We had a scan booked with the HK public health system for the following week, where they test for Down's Syndrome and Dr. Ferguson recommended we keep the appointment to check on things again. She wrote a letter detailing what had happened and sent emails off to senior doctors she knows within the system asking them to have a look over Sher. Again, a lovely thing to do, and we thought prudent given the challenges in Sher's last pregnancy; but again with hindsight I think Sally wanted expert eyes ready to see and confirm what she suspected at the time. We came away relieved, happy and optimistic.

Pat, Pat...Oh shit.

Flash forward to a week later. I was nursing a cold and Sher was bracing herself for the public health system. Expectations were not high, but neither were they as low as they could have been. We expected we would see a senior doctor and that the hospital would have the emails from Sally. Our appointment was at 3pm, we were seen around 4pm. So far, so normal. The sonographer was a young nurse, not what we expected. She also asked a lot of questions which we had already answered. Many, many times. As it turned out, they were in the file when she looked. She did a fairly good scan, aside from poking Sher rapidly in the belly trying to get the baby to turn. I half expected it would just so it could give her the finger. Sher was a trooper, she was quiet and calm and at no point did she assault the nurse. After the initial scan the nurse said she would get a senior doctor to look at the baby because the belly protrusion was still there. We waited a short while before Dr. Mary Tang arrived. 

Dr. Tang is a very soft spoken, gentle and kind person. She is also extremely good at her job. We didn't know any of this at the time, but it is totally apparent to us now. We all went into another room to have another scan. The lights were dimmed, the machine hummed in the corner and the aircon pumped cool air into the room. All of this combined to make me very drowsy. Well that and I didn't read the label on the box of panadol I had just used to medicate myself with, if I had I would have seen the words "may cause drowsiness". However I managed to stay awake for the scan. It was a long scan, with lots of very hushed conversation in the corner between Dr. Tang and another Sonographer. I caught glimpses of the baby, it's heart pumping, it's brain (so cool!), legs, spine, head, and that tummy. I did wonder while I looked at it, why the baby's legs were crossed. Dr. Tang finished the scan, cleaned Sher's tummy of the gel they use, patted her on the leg and said we should talk. 

Something new I have learned from this whole experience; when a doctor pats you gently on your leg, hand, arm or shoulder while looking into your eyes it means you're in the shit. Bad things are going to be said. You're probably fucked. If they pat you elsewhere...enjoy I suppose?!

Mary sat us down and took us through what she had seen. She explained that the protrusion from the baby's tummy was very large, basically the same size as the baby itself, and likely contained the baby's liver and intestines, possibly other organs as well. This is not a disaster. Babys are born all the time with this sort of problem, doctors simply perform surgery immediately to put everything back in place. Ours was different though because everything was encased in such a smooth sack, for lack of a better word. This is a telltale sign of bigger problems. 

Next Mary told us the baby's arms and legs weren't in the right position. At 12 weeks a baby's hands should be floating up beside it's face with it's arms bent at a right angle. It's legs should be floating straight out in front of it. It was difficult to see our baby's arms at all. The right arm appeared to be down beside it's body, with the humerus (big bone connected to your shoulder - thank you wikipedia) and hand visible, but not it's forearm bones. Basically there was a big gap there. It's hand was also flexed in towards it's body, if you flex your hand towards you so it makes a right angle with your forearm, that's what the baby's hand was doing. The left arm wasn't visible at all, baby may have been lying on it. On to the legs! Our baby's legs were crossed over making an X. 

Genetics 101

Based on this information Mary told us the baby likely had a chromosomal abnormality. Mary gave us the 3 types of abnormalities which are most common, I'm willing to bet you've only heard about 1 of them unless you've been through the same as us. First off though, some jargon, the word Trisome  means you have three copies of a chromosome in each cell instead of two, this is bad and doesn't give you super powers as you (I) might expect. So there's T21 otherwise known as Down's Syndrome. T13 or Patau Syndrome and T18 known as Edwards Syndrome. Based on the scan, Mary thought the baby had T18, Edwards Syndrome. 

You've heard about Down's Syndrome right?! Of course you have, you've also likely seen many kids with Down's and hopefully you will have experienced how lovely and 'normal' (what's normal?!) many kids with Down's can be. Chances are you haven't heard about Patau (T13) or Edwards Syndrome (T18), we certainly hadn't. The reason is simple and awful. Baby's with  Patau or Edwards syndrome usually die. If not in utero then within days of birth. Their brief lives are a constant struggle just to survive. Their major organs are often defective, their bone structure is usually abnormal, their nervous system is shot, and they are likely to have massive neurological problems. 80% of all babies born with Patau Syndrome will die before the end of the first year of their lives. For  babies born with Edwards Syndrome it seems their chances are even smaller, 92% will die within the first year. The average lifespan for a child with Edwards Syndrome is between 5 and 15 days. And I imagine that's two weeks of agony for the parents and the baby. (All this info is available through wikipedia and other support sites for both Patau and Edwards Syndrome)

Dr. Tang didn't tell us any of this at the time. There was lots of patting of Sher's knee, lots of questions answered, lots of information given on what we could do next, and a brief mention that the baby would likely not survive. Speaking for myself, I left with enough information to be almost certain the pregnancy was beginning to end. In my mind there was a clear path to where we were heading. I wasn't upset by it, not teary anyway, just very, very sad and shocked. Dr. Tang suggested we have another test, a CVS, essentially a biopsy of the placenta, to confirm the T18 abnormalities. To say we were stunned would be an understatement. We had picked out a name. We had told our friends and families. How do you take that back? How do you not be 'that' couple? When people see us with our beautiful, perfect 18 month old daughter, will they now say quietly that we 'lost' a baby? I remember reading a mother's description of being told her child had severe special needs I think while she was still pregnant. She described is as like going on holiday. You're packed and ready to go to Paris (for example, not everyone's cup of tea though), holiday of a lifetime, luxury awaits. Only you get on the plane and they tell you you're going to Libya instead. You'd be pretty pissed and disappointed wouldn't you, before seeing the positives (sun, sand, history!). For us the plane wasn't going to Libya, it was on fire, plummeting to the ground. We sat out in the waiting area talking about what to do next. We were both on the same page and fairly clear about where we were now heading. We asked Mary just a few more questions about testing for future reference, i.e. is there something wrong with us, or was this just a freak of nature? 

Somehow the conversation turned to the termination and this is where the breath stuck in my throat, and I started to tear up. Dr. Tang said we would be given the choice, after the termination, to see the baby before it was taken away. This was devastating for me. I often think in pictures, so the images that came to mind were profoundly sad. That I'm a dad already and have known what it's like to see my baby pop out of her mum, all goey and blue, makes the images in my head even worse. I just can't imagine seeing my child, lifeless. And that's what it comes down to. That's my baby in there. It's a part of me. Pregnancy is incredibly abstract for me, I honestly don't know and can't imagine what it's like being pregnant. My wife has tried explaining it to me, as I'm sure many other wives have to their husbands, but I just don't get it. The closest I can get is doing an extremely satisfying fart, after a few minutes of discomfort. I think you'll agree the two are in no way similar. But none of this changes the fact that once that baby is out in the world, it's my job to look after it. I can be hands on, like I am with Carys. It is something I have such great pride in. I don't understand dads who aren't involved in their child's life. Yes they drool, fart, barf and shit their way through their first few months of life. No you can't take them out to play sports, yes you have to sit with them, feed them and be gentle with them, but that doesn't mean you're being any less of a man or the things you're doing are somehow a woman's job. Quite the opposite, your wife needs you to be the man by doing those things, in this case it's ok to be slightly neanderthal, take charge a little, tell your wife to go sleep - you got this. In the words of Bruce Willis, Cowboy the fuck up. It is so important for me to be involved in my daughters life, it is part of my identity. Dad, Hubby, Geek, Baker, Teacher. That's me. You don't get the title of Dad just because you procreated. You have to be part of that child's life before you get that title, and it can be taken from you anytime. All this to say (sorry for the rant there) I won't be able to do any of this for Climas 2.0. Instead I have to choose, with my wife, to end his or her life.

The CVS test was not fun because it involved a very large needle going several inches into my wife's abdomen. The results came in on Monday and confirmed what we already knew. "Very positive" were Dr. Tang's words. We were counseled in a follow-up session, with a different doctor who was nice but either didn't understand everything or wasn't listening properly. We confirmed we wanted the termination as soon as possible.

Goodbyes

So where does this all leave me? Sher has been asking me this all week, which I appreciate because I'm stuck on that question. Sher has go-to people she can talk to. I don't really have go-to people. I'm used to keeping things to myself and working through the problems over time. This works for me, but can be lonely. There's my Mum, a qualified bereavement and relationship counsellor. But she's my Mum, you know what I mean. I can talk to her about anything but I don't always want to because it's not always right to or at least doesn't feel that way. I have lifelong friends I can go-to, but they're at very different stages of their lives. They don't have families, they aren't in relationships or they're focusing on their careers. I don't know who to talk to about this. I'm sure I'll figure it out, and it could simply be to talk to all of these people, spread the load as it were.

One thing I'm certain of right now is that this is nobody's fault. I don't blame myself and I certainly don't blame my wife (read it again and again love, I will never, ever blame you for this - you did nothing wrong, nothing at all. You're an exceptional Mum and a wonderful person. Please don't ever doubt yourself about this.). This is all just nature taking it's course. There's no avoiding what we have to do, because if we don't nature will and it will be much later on and so much more painful for everyone.

Here's where I'm at now, the night before our baby is gone forever. I'm so, so sad. I'm so sad that what was supposed to be a wonderful experience, an exciting adventure lasting a lifetime is being cut savagely short. I'm so sad that I won't get to meet my baby. I'm sad that I can't help my baby. I'm sad that all the images I've constructed in my head without even knowing I've been doing it, of a life with two beautiful children no longer apply. I don't preclude the possibility of more children, I want and expect more but there will never be another life like the one we have now. I'm also scared about tomorrow. I don't want anything to go wrong, but when your mind is already in a dark place it's hard not to think dark thoughts. I want the day and the 'mini-labour' to go quickly. I want this over with. I don't want our baby to suffer at all, I dread this so much. Most of all, I'm sad and at times feel terribly guilty, that I'm choosing to end our baby's life. It's not rational I know, the statistics don't lie, our baby is going to die no matter what; be it 6 months from now, a year or possibly more. I can rationalize the choice extremely easily and clearly. I know why we're doing this, but the Dad part of me can't stand it. And I'm all Dad now. I know people will want to tell me why this choice is best, and I agree with them, I've had the conversation with Sher and with myself and with the doctors. I know. But I'm the baby's Dad, he or she is precious to me like nothing else. Rationalizing isn't about feeling, it's about logic and intelligence, it's about not feeling. As a Dad I can't switch off the emotions I feel for my children.

So, to finish. I'm so grateful for Climas 2.0. The past few days have been both terrible and lovely, but this event won't define my life. My life will be defined by the family I have now, and in the future. By my wonderful wife, who is so incredibly strong, and so devastatingly beautiful (hawt in the lingo of today's youth). I'm so lucky to have her, and her love. And it will be defined by my exceptional daughter, who brings me such joy every single moment of every day. And it will be defined by the sons or daughters I have yet to meet or even imagine, but know are part of my future.

To Our Baby

I will never forget you. You are a part of me and I'm a part of you. I'm so proud of that. Know that you did nothing wrong. Know that I love you so much. I will miss you terribly. Thank you for being part of my life, even so briefly. You're family. We were going to call you Devon, I hope you like it. Goodbye for now little lovely.

Love Dad

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