Our 9 month Nightmare

Part 2 of our nightmare. Part one is here.

Finding out we were pregnant the second time around, was anything but good news. Our baby was given a 30% chance of being born with some form of foetal abnormality because of a virus I was exposed to: cytomegalovirus or CMV for short (a form of glandular fever).
After a lot of soul searching, a lot of crying, and what seemed like weeks of a never-ending nightmare, we decided to take our chances. We would go ahead with the pregnancy and hope for the best.

Once we'd made that decision, I wanted the pregnancy to be as normal as possible. I knew that stress increased my chances of a miscarriage and I knew that if I was excessively anxious during the pregnancy, it increased the chances of my baby suffering from an anxiety disorder later on in life. I wanted him to benefit from the same opportunities as his older brother. I wanted him to know that he was as wanted as his older brother.
But he wasn't.

He was wanted of course. But there was so much anxiety about what he would be like. What kind of life would he live? How much would our life change after he arrived? I remember hoping that I'd miscarry rather than have a disabled child. I am not proud of it. But that's the truth. I remember feeling better about him being a boy, because I knew that boys were more likely to miscarry than girls and surely if there was a problem with the baby and nature tried to "take it's course", the baby boy would be weaker than a baby girl and therefore more likely to miscarry? I know! Screwed up logic!

And so, we took it a step at a time. A scan at a time.The problems with the baby could range from something as mild as partial loss of hearing, all the way through to profound mental retardation. Somethings could be picked up on the scans, such as calcification on the brain - which would point to problems on the more severe end of the scale, but no scan could pick up auditory or visual impairment, or epilepsy.

At every scan, we held our breath. The ladies doing the scan always informed us that if they picked up anything, they would not tell us, but inform our obstetrician. Every time I was on that bed, looking at my baby, I couldn't help but see white spots on the brain, and was it just me? Or did his head look a bit big? or was it small maybe? Why was the technician spending so much time looking at his heart? Was that a sigh I heard from her? Why is she frowning?

It was horrible!

18 week scan

But, with every normal scan and every normal blood test, we relaxed a little.

Maybe he was going to be ok after all.

And then, at 32 weeks, I find myself in hospital, with regular contractions. I am beside myself, because I know that babies with CMV are often born prematurely. I know it. He has CMV.

That morning, I noticed mild contractions and put it down to braxton hicks, but they were regular and became more frequent. First every 8 minutes, then every 5 minutes, then every 4 minutes and by evening, I was still getting them. So I called the hospital and they asked me to come in.

I pack my bags and cry all the way to the hospital.
They hook me up to the machines and check me out. They can see I am contracting but there are no other signs of labour.

What a relief! It was braxton hicks after all! I go back home.

A few more weeks and finally the big day comes. I'm to have him via c-section. The nurses have all been briefed. I know, because when I tell them that I was diagnosed with CMV, they nod, they tell me that they are prepared for any problems and the paediatrician is on stand-by.

The night before my c-section

I get prepped-up and before I know it, I am lying on the operating table, about to meet my baby. So far, everything has been normal, but today that could all change.

One of the symptoms of CMV is that babies are born with a rash all over their body.
We wait.
We wait.
And then... the words "here he comes" and as they pull him out of my body, the first thing I look for is the rash. Not the colour of his eyes or whether he has hair. But the rash.
And he doesn't have it.
He doesn't have it.
We breathe a little better.

But we are still not out of the woods. Some babies are born symptomless but 10% of those, still go on to develop neurological or developmental problems within the first 2 years.

We have a quick cuddle and while they stitch me back up, they take him with dad to the room next door to be weighed and measured and checked out. And checked out again.

The midwife tells me that there is no evidence of any issues at this stage.
We breathe.

And then on day 2. The rash.
He is covered in it. I am freaking out inside. I don't tell my husband because I know how devastated he would be.
They call the paediatrician. She comes immediately and checks him out. It's not CMV. It's just a normal hormonal rash.
Breathe.
And then come all the other tests.

Hearing test - not just your basic one - Normal.
Vision test - Normal.
On day 3, he has fluid in his nose. Is that normal? It is.
Breathe.

Hearing test

And then the blood test. It will tell us definitively whether or not he got infected in the womb.
If it comes back negative, we can put it all behind us.
If it comes back positive, and given that he does not have any symptoms, we'll have to spend the next 2 years waiting and hoping.

They take the bloods on day 5 and we go home on day 7. We try to act as normal as possible. We go through the motions. Smile to our guests who mostly have no idea.

On day 9, the dreaded phone call from the paediatrician. The results are back... and... he is negative.


He is negative!!!

He's ok!

He'll be ok!

He never got infected!

I can't tell you what a relief that was.
We could start living normally again. We could start fully enjoying him. This little baby who almost didn't make it.

Our baby

Our story had a good ending. I know that not everyone is as lucky. And I am sorry if you weren't. I know somewhat what you had to go through. And it is horrible.

When I was diagnosed, I went online and read all the stories about CMV I could get my hands on. And they were not good. I didn't not find one single positive ending. But I am here to tell you that sometimes, it does end well. If you are pregnant and have been diagnosed with primary maternal CMV, there is hope. Hang in there.



A few facts on CMV:
- Around 80% of people living in the UK are CMV positive. Around 50% in Australia.
- 90% of the people infected with CMV don't have any symptoms. My husband happened to be one of the 10% and that is how we came to know about my infection. 
- The biggest carriers of the virus are kids in day care.
- The virus is mostly inoffensive unless you have an autoimmune disorder or get it for the first time, when you are pregnant (only occurs in about 2% of the cases).
- If you do get it for the first time when you are pregnant, your baby has a 50% chance of being infected. Of the 50% who do get infected, 40% still go on to develop normally.

Feel free to contact me if you would like more information on the topic.

Abortion: my story.

I am against abortion (Or if you want to use the term designed to make it more palatable: termination of pregnancy. Or better still: ToP).

I always have been.
Sure there are some exceptions. Like rape or a child conceived out of incest. I still don't think that I would personally go ahead with it, but I can understand that some women may choose to.

*****

That had always been my stance on abortion. Until............. life happened, and changed my mind...

My second baby was planned, wanted and loved (as was my first). We were so excited! Our family was finally going to be complete. The first few months were very similar to my first pregnancy: pretty easy. A bit of morning sickness and a good dose of tiredness but nothing out of the ordinary.

And then our world crashed.
Tests revealed that bub had been exposed to a condition that was very likely to cause severe fetal abnormalities. We were faced with potentially having a baby who could not feed himself, who would never talk, who would never run around giggling his little heart out, who would not hear the lullabies I'd sing to him.

Our doctor did not know much about the condition. He said that we needed to consider our options and that a termination of pregnancy was one of those options.

We went home devastated. We cried and cried and cried.
In me, was this precious little being, whose heart was beating, and we had to decide whether to let him live and potentially have a severely disabled child or take away his life. Stop that little heart beat.
I'd seen him on the scans. I saw his little nose, his hand held high above his head. How could I let them take him away?

Part of me was screaming that we could not have a termination just because he was not going to be perfect. That to me, was not a good enough reason to terminate. If that was what life had in store for us, then so be it. I'd judged women who'd terminated for that reason before.

But when faced with the reality of having a child who could never care for himself, who would be like a baby for all of his life, who would have no quality of life, who would sit there, drooling, watching his brother run around kicking a ball, I did consider having an abortion.

It broke my heart to even imagine killing my child. Because that was what it was to me: I was going to kill my child because I didn't want to have to deal with him. He was relying on me for his life, and I was going to take that away from him. The doctors were going to put me to sleep, go in there and suction him out. Would he feel the pain? Would he scream? I didn't know how I was actually going to go ahead with the procedure. The guilt was going to destroy me. I didn't know how I'd ever live with myself after that.

But it wasn't just me I had to consider. It was the impact it would have on our couple, and more importantly, on our son. Would he be neglected because of all the attention that a special needs kid requires? I know plenty of kids have special needs siblings and cope quite fine but at that moment, all I could see was my son playing on his own because mummy was busy with his little brother's many needs.

And what about my baby? Would he want a life of sitting in a wheelchair, in nappies forever, being fed through a tube? And what would happen to him when we were too old to look after him? Would he end up in a home? Would his brother visit him?

I imagined meeting my child one day, and having to explain to him why we had chosen to do away with him. I was broken.

The worst was that we had to make a decision, not knowing whether or not our baby would have any problems. Would we be terminating a perfectly healthy pregnancy? There was no way of knowing until after he was born. And if we terminated, we would never know.

The guilt of having an abortion, I knew, would stay with me forever. How would I feel about sex after that? How would I feel about falling pregnant again? How would I get up the next morning? How do you go to hospital and lie on that bed for them to take your baby away?

The toll on me would be immense if I killed my baby. But perhaps it was what had to be done for the better of my family, including my unborn child. Perhaps it was the sacrifice I had to make.

We gave ourselves a week to decide. We spoke about it and cried for a week. On our own. Because this was not something we could share with friends and family. We couldn't face having to tell them that we'd decided to terminate. When someone close dies, friends and family are there to support you, but when you grieve after an abortion, you grieve on your own.

At the end of that week, after many tears and sleepless nights, we chose to keep the baby. We couldn't go ahead with the termination. We would take our chances. The doctors said that he may be ok, and we held on to that.

I have always been against abortion.

And I still am.
In principle.
Especially when abortion is used as a means of contraception.
But when faced with reality, I considered it. And I can now understand why some would choose to have a termination in those circumstances. I personally couldn't go ahead with it, but I know the heartache. I understand the pain of having to make that choice. And I will not judge again.

Part 2 of this post coming soon: the stress of the pregnancy, the endless tests, and our baby.