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!
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| 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.
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| 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.
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| 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.
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| Our baby |
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.
Your story is amazing. Your little boy is beautiful. What a journey filled with so much angst. Your relief must have been huge!
ReplyDeleteWhat a relief. But also, what an incredibly stressful time for you. I'm so glad it all ended well. And I have to say... what a cute little bubba!
ReplyDeleteWow! Thank you for sharing. I have a feeling this is what my little one might have been infected with while I was pregnant. He has a partial hearing loss in one ear and now developmental delays. He is now 13 mths old. I have a friend who lost her baby but was told her bub had CMV and she asked me if it was what my little one had. That was the first time I'd heard of it. Do you know if there are ways of finding out or I'm assuming it's probably too late now?
ReplyDeleteHi Veronica. This is how it works: if you test him and he's negative then you'll definitely know it's not CMV. If you test him and he's positive, you won't know definitely whether he was infected before birth or has been since then. That is MY understanding of it anyway. I'm obviously not a doctor, so if I were you, I'd get that information confirmed by an expert. You could get tested too I guess. Again, if you are negative, you'll know your baby couldn't have been infected whilst in you tummy. But if you are positive, you may have been infected after giving birth.
ReplyDeleteThere's another test they did with me to test the concentration of the virus in my body. That told them that I had recently been infected (in the last 4 months). Maybe you could do that one too. It's not exactly accurate, but I think they can roughly tell whether you have been infected for a few months or whether it was years ago. If you were infected years ago, theoretically that shouldn't have affected your bub. It's only if you get it for the first time while you are pregnant, that it can potentially affect the foetus.
Ultimately I guess, you need to ask yourself whether it matters to you to know exactly what happened.
I hope that helps somewhat. Let me know if you want the names of the experts I spoke to.