Endoh’s Dungeon

I believed everyone has a dark secret that they never really wanted to track back on. Well, I am only human, just like anyone else I have mine too. Let’s just say, I was THAT close to being a father. Yea, I know many would jump to the conclusion of “shot-gun” before they even read the full story. I don’t really care… by all means jump to conclusions of your own if you’d like.Note: This is going to be a really really long post.

I was on the phone for the past 2 hours talking to Mike (real name hidden for privacy sake) and he told me his wife is expecting. It’s been three months. A happy piece of news for a couple whom just recently celebrated their 1st wedding anniversary, and a first child too. Mike didn’t sound happy though. He sounded really down and a little anxious, which was quite surprising to me. His story eventually hit me hard… baby is struck with Spina Bifida. He was caught in a bad situation and he’s in need of advice.

Why me? I lost my unborn daughter to Spina Bifida too.

Shortly after I got hitched, we discovered she was expecting for two months. Like any husband and wife, we were overjoyed. The joy was not just about having our first child, but my ex-wife was medically certified not to conceive easily. So, the news of my ex-wife expecting was more than just being thrilled. I shall not go into the crazy things we did in celebration.

The 4th month came, but there was nothing to celebrate anymore. The blood test showed that one of the chemicals in her body was four times higher than it should have been. You guessed it right. That was the alarm bell sounding indeed. Further tests and scans over the following week revealed the ultimate truth that had played around with our mind for many nights. Not only had my daughter been struck with Spina Bifida, her left brain was also not developing and filled with fluid. I still remembered that day when the doctor broke the silence and handed us the confirmation. My ex-wife and I went dead silent, we were speechless.

Picture Insert: This is not my daughter, even though I had a photograph of her foetus which I kept away from the sight of my ex-wife. This is just an example to show you how the hole in the spine looks like. Spina Bifida is a rare condition where the spine failed to close up, exposing the spinal cord or in rare cases, extruding bones.

This is the situation Mike is going through right now. I know it all too well, having lived through it. No couples will ever want to hear of such news on any of their babies, let alone the first child. Mike must have been equally traumatized as me years back. Moreover, Spina Bifida is still considered rare in Singapore. What makes it even more rare, is for my daughter to be struck by not one, but two syndromes at the same time. Mike and his wife could be questioning themselves just like how my ex-wife and I did back then. Why does it has to be us? Why our baby of so many? What did we do wrong? What did we eat wrong?

I had to keep Mike away from these thoughts. For the entire two hours, I had to keep emphasizing that this is not the time to ask all these questions. I know I know, it’s tough. Why would I not know?

That time, my ex-wife and I were devastated. We felt so lost. My ex-wife came from a complicated family background so she had nobody to turn to except me as her husband. For me, I had nobody to turn to as well, because it’s hard for me to explain the situation to my parents. We were left in a world of our own, facing the cruel truth. As a husband, I had to make a decision whether to continue with the pregnancy, or terminate it.

There were two clear options for my ex-wife and I to go through, despite the fact that we weren’t really over and done with the shock.

1. Continue with the pregnancy full-term.
The doctor suggested there could be surgery done within the womb or at best, immediately after our baby is delivered. However, there were risks attached to this option. There could be extruding bones which might pierce my ex-wife’s internal organs and eventually lead to internal bleeding. Also, at the severity of our baby, the chances of survival is extremely slim. The chances of a still-born is close to 100% in our case. Even if we are able to do something to her spine, there’s absolutely nothing we can do to the brain with fluid.

2. Terminate the pregnancy through induced labour.
This is the easier option of the two for anyone to consider. However, things for us are not as easy. My ex-wife is allergic to four different families of medicine so that ruled out any possibility of panadols or painkillers when she goes through the pain. All these years, a mere fever can get her bed-ridden for days due to the inability to consume normal medicines. This made our easy option not easy at all.

I held several meetings with the doctor and psychiatrist privately because my ex-wife was very much unstable at that time. I had to make a decision with her within two weeks. A day of delay, means a day of additional risk for the mother.

We tried to convince ourselves that there may still be a chance for our daughter to live an adjusted life even if it is 100% that she will never be able to walk upon birth. But the stakes were just too high for us to take that risk. The gap in my daughter’s spine was pretty huge, stretching half her entire torso’s length. The psychiatrist also advised me that the longer the baby stays in her, the more emotionally attached she will be to the baby. Things might get very “ugly” if we were to carry on with the pregnancy full-term only to deliver a still-born. The possibility of post-natal depression and suicide were among the list of worrying effects. These are things I told Mike to seriously consider, because it will be one of the biggest decision we have to make in life, for the good or bad.

It was hell for me, I swear. I was careful not to give Mike any false hopes, or leading him to any false hopes because that was me back then. I constantly tried to rally against myself with “who knows this might work…” or “who knows that might work..” when the facts were very much against us. I convinced myself to push back my decision throughout that two weeks because I have never had to make such a difficult decision in my life before. Not least to mention, it can’t be my decision alone on my part. My ex-wife has to be agreeable too. It’s tough to hold back my tears, and pretending to be strong and lead her to see the odds under penetration and understand the limited options we have.

We finally decided the day before we were due to give our answer. Termination of pregnancy, and preserve the mother’s life at all cost!

She was rolled into Thomson Medical Centre another 2 weeks later, and she was already 5 months pregnant by then. Prior to that, there wasn’t a single night I wouldn’t hold my ex-wife’s hand and place both our hands on her tummy. Simply, there weren’t much time left to tell Amanda, daddy loves her too. I couldn’t recall any single hour that she wasn’t sobbing. She didn’t sleep much, neither did I. She was looking for me constantly so the spare bed remained packed the same way it was sent into the ward. I sat guarded beside her bed throughout. The only good thing about Thomson Medical Centre was, the rooms were really private and I could just keep talking to her. Each time I felt like crying, I would make an excuse to head to the toilet and wash up. At that point, I think the last she need to see is me breaking down as well. This was something that I wanted Mike to know and he must do it. He can’t afford to let himself break down because he is the only person his wife can count on now.

The inducing of labour was painful and torturing for my ex-wife. After she finally delivered the foetus, she was still in pain but yet, there’s not a single medicine she could take. As a husband, all I can do was sitting beside her and making sure I am within reach at every single second. I haven’t really told Mike very much about the entire procedure since they haven’t really make a decision. Maybe, wait til the decision is finalised.

My daughter was supposedly named Amanda Renee, but the day never really came. All I had was a photograph of the foetus which I had to hide from my ex-wife. She will not be able to handle the sight of our baby in that state. It was only last year, that I eventually burned that photograph. My ex-wife never got to know I had Amanda’s picture, but I am contented she never knew. Staying in the same household where she has access to any part of the house, it was extremely tough to hide the photograph appropriately without being discovered. I don’t know if I have done the right thing. Have I been unfair to her by not letting her have a glimpse of Amanda? I don’t know. All I knew was at the rate of her depression back then - showing her that photograph was an absolute no-no.

Sometimes, I begin to ask myself… if we had the baby, will things be different? Perhaps we would still be together? I am not blaming the baby of course, I am just wondering back then, would the existence of our baby change the entire marriage? These are question marks which the answers will never be known. Fact is, we’re no longer together.

Someone asked me, do I hate her? Let’s put it this way, where the love has ceased, there’s no hatred. Things just broke down completely… so let’s keep it at that.

For now, I hope Mike can keep himself composed and go through this difficult time together with his wife. This is a situation that nobody else can understand, except for us whom have gone through the same fate. I seriously hope he will be able to make the right decisions. Whatever decision they arrive at in two weeks time from now, I know they did it out of love for each other, out of love for their unborn baby. I will definitely be supportive no matter which decision they will settle upon.

I’m just getting a little emo because I didn’t quite expect friends around me to suffer from the same fate. It was supposed to be a rare condition. I thought I never had to talk about this term Spina Bifida ever again… who knows!?

Why did it have to happen again?