A mother’s perspective

I keep reading that miscarriage is still a taboo subject and that people aren’t talking about it. What I have discovered through my own tragic circumstances, is that people really aren’t talking about is those unfortunate people who discover late into a pregnancy that there is a problem and have to choose whether to terminate. Here is my story.

Is it best to kill my baby? Definitely not the way the specialists in the foetal medicine centre phrased the question, but definitely the question I felt I was being forced to answer.

By this time, I was 34 weeks pregnant and after having breathed a sigh of relief from a healthy 20-week scan and way past the point where the baby would have a good chance of survival if he came early. We had agreed on a name, had the baby shower booked and were good to go.

This was a much longed for pregnancy. We’d suffered previous miscarriages and so didn’t take a healthy pregnancy for granted. There had also been a slight anomaly at the 12 week check but after forking out £400 for a US based Harmony Test (the alternative was amniocentesis – sticking a big needle into my stomach with a 1% risk of miscarriage which seemed far too high to take) we were assured everything was OK.

Now we were on the home stretch. A final ‘growth scan’ at 32 weeks and then our new son would be here. The scan was optional, but why would I refuse a chance to see my baby again? It had seemed ages since we saw the lovely health baby at the 20-week scan and I was desperate for another glimpse. Whereas I had gone into the 12 week and 20-week scan with trepidation, I was excited going into this one. I almost told my husband he didn’t need to come. No one told me there was anything to worry about. No one told me that things could go wrong at this stage.

The inkling of a problem

The scan was at my local GP surgery as they have onsite facilities. We looked at the lovely baby on screen and couldn’t stop smiling at each other when we saw our healthy baby on screen, our lovely baby. Maybe I was incredibly naïve, but my logic was – I know he’s alive because I can feel him moving, so therefore he must be healthy.

The guy doing the scan seemed to be taking his time. He then asked if he could get someone else to take a quick look. They were both pretty quiet, but I was too far into my baby bubble to really notice. They don’t even normally do a 32-week scan so they couldn’t possibly find anything wrong at it.

Eventually we were told that it looked like the ventricles were larger than they should be. For us it didn’t really mean much – at that time we didn’t even know what ventricles were. It was all very calm and reassuring. We were simply asked if we would mind going to the main hospital the next day to have it checked out in more detail. Again, in my innocent state, I just remember thinking what a great service it was that they could book us in the next day and we didn’t need to wait a week. With hindsight, the speed at which we were seen should have been a bit of a warning sign.

We arrived at the hospital and were ushered past the main waiting area to a different waiting area. We later realised this was the waiting area for people who aren’t necessarily getting the ‘congratulations on a healthy pregnancy’ results they’d hoped for.

We had our scan and it was confirmed that our baby had severe ventriculomegaly, but they did not know why. What they did know is that our chances of having a ‘normal’ baby had suddenly reduced significantly. The doctors started talking about termination.

The long wait for an explanation

The critical thing now was to discover the why there was a problem. The first step was to take mine and my husband’s blood away for sampling to see if there were any genetic or other factors that could be causing the problem. Luckily, they came back clear. So now we were left with no choice, the amniocentesis we had so piously refused before was the only way to know for sure what was wrong. Nobody could reassure me what the statistics relating to miscarriage caused by amniocentesis that this late stage were, but our other odds had changed too, so the risk was one we had to take. We were booked in two long days later.

It was not a reassuring experience – the first doctor admitted that they had not performed one this late stage before. Luckily, his supervisor saw the concern on my face and to my relief offered to do it instead. Whilst I am all for teaching hospitals, I took the selfish decision that in this instance that it wouldn’t be my baby they practiced on.

Then we just had to wait. Google was not our friend. Hours were spent understanding what ventriculomegaly actually was. What the lives were like of children born with it were. What the prognosis was. And then there was just more waiting.

Results Day

Eventually, at 34 weeks, we were back at the hospital getting the results: congenital Toxoplasmosis – a virus spread by cats and we didn’t have one. Word had obviously spread around the medical professionals in advance of our appointment as we were suddenly elevated to what can only be described as medical celebrity status. Doctors and students kept asking if they could sit in on our test/scan/discussion. I think at one point I counted 12 different medical professionals in the room, just observing how we were reacting.

We were being told we could terminate and that it was our decision. A decision that we were responsible for, but that no one could give us the information we needed first. What would be the impact on our lovely baby if he was born? What would be his quality of life? No one could tell us. We spoke to professional after professional who all said the same thing – he will be somewhere on the spectrum between fine and really bad, but we can’t tell you where.

We weren’t ready to take the decision straight away so requested the treatment medication whilst we figured out whether to take the decision to end our son’s life before it had even started.

This is when the enormity of the taboo hit us. Nobody talks about late stage termination and we were joining those suffering in silence.

Putting on a brave face

That weekend my lovely friends had arrange a baby shower for me at my house. We debated whether to cancel it or not, but didn’t want to tell our friends anything was wrong. What we were going through was so intense that we weren’t quite ready to let anyone in. So, there we were, trying our best to enjoy our baby shower, surrounded by friends full of excitement for our new arrival whilst trying to bury deep inside the heavy decision we had hanging over us.

Monday came and we were thrust back into the reality of hospital appointments and decision making.

Making the hardest decision of our lives

We were able to get a second opinion at another hospital, but even they couldn’t shed any more light on the potential outcome and what we were facing.

One thing I couldn’t get my head around was that if we decided to terminate I still had to go through the trauma of childbirth, at this stage to a fully formed baby. I would have to give birth to a dead baby that I had just felt them kill by putting a needle through me and into him. I still cannot get around the inhumanity of it. I asked why they couldn’t just put me to sleep and take the baby out then via C-section. I’d wake up in pain, but at least I’d be spared the memories of this being my first experience of childbirth.

There was one doctor who really tried to push us down the termination route. He was the only one who was prepared to not sit on the fence. He gave us statistic after statistic of why termination was best, including divorce stats! He reassured us that if we went ahead with the pregnancy our son would have severe problems. He was a bully and we hated him at the time. However, with hindsight all I see is a very brave man with the most difficult job in the world. He was trying to make sure that if we did decide on termination we had closure and weren’t faced with a lifetime of ‘what if he’d been the miracle?’. I can imagine that if we had terminated and had even the smallest seed of doubt as to whether it was the right thing it would have eaten away at us for the rest of our lives.

Deciding to terminate

Finally, Friday came and we made the decision to terminate. Before we called the hospital to come in, we wrote a joint letter that we both signed writing down all the reasons why we had come to the decision and confirming it was a joint decision. We did this to make sure we couldn’t hold it against each other later in life. I thought we’d be all cried out by now, but making the decision to terminate led to new waves of anguish that just engulfed us whole. I don’t think I’ve ever or will ever experience raw pain anything like it.

We made the decision to tell friends and even siblings that our baby had died naturally. That it had stopped moving and passed away peacefully. We needed time to heal and not be judged (or imagine we were being judged). We definitely weren’t ready to be bombarded by questions by friends on their own journey to parenthood who were trying to absorb every piece of information that might be useful to their own pregnancy.

So, we called the hospital to tell them that we were on our way in. They told us it would be too late in the day by the time we got there so we had to come in on Monday instead.

A change of heart

Over the weekend, I realised that I was not emotionally or physically strong enough to go through with the termination. I would like to say it was something deeper like renewed hope, or faith, but in fact it was a very selfish decision: I did not want to give birth to a dead baby and have to live with the trauma that he was dead because of my decision. I couldn’t cope with the fear that we might never get pregnant again and yet I would have taken away my one shot of parenthood. By Monday morning we had talked ourselves out of our decision and decided that we would just live with whatever happened naturally.

We gave birth two weeks later and have spent the last three years getting to know what an amazing person we created.

The benefit of hindsight

What we have learnt is that (for us) the advice given pre-birth is entirely inadequate. The focus of all our sessions with various medical professionals revolved around how he would turn out medically. Would he be able to walk? What would his cognitive function be like? Would he ever be able to live independently?

No one once mentioned the indescribable joy he would give us. The happiness that we would experience every time he smiled. The liberation that not being tied to traditional milestone development would give us as parents to rejoice at every step of progress. No one told us what a fantastic, cheeky personality he would have. That he would light up any room he entered and make everyone around him fall in love with him. No one told us that your life just adapts to things you didn’t even think possible. In the first year of his life we had about three appointments a week, every week. I look back now and think how did we manage that? But we did.

Sharing our experience to help others

I’m sure there are a lot of other silent sufferers like us out there who came close to terminating or terminated. No one will ever know the trauma experienced. Many of us probably started our journey into the world of disability this way. And like us, many probably did it alone. There are not many chat groups available for this or obvious sources of help. I did use ARC who provided some support, but really wanted to talk to more people who had been through something similar.

If you have had a late stage termination or had to make a decision to keep a pregnancy when you knew there were health concerns and would be willing to talk to others, please provide me with your information. I will always reconfirm with you that you are still ok to talk prior to giving out your details and you can always change your mind later.

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