Early in my pregnancy, I had a battery of tests to investigate my rash (remember that?). It was all a bit worrying. My GP called me in to discuss the results but they found nothing other than a mild infection which they insisted on treating with antibiotics to my intense chagrin. My chagrin became even more intense when my gynaecologist subsequently said that it probably wasn’t necessary to take the antibiotics and my friend the heart surgeon said likewise (I had elevated protein in my urine for my whole pregnancy and it was fine she said, mind you, this is the woman who had to take STEROIDS while pregnant so really I don’t know why she was worried about a few old antibiotics). As one of these odd people who won’t take a paracetemol when pregnant, it really went against the grain to take a course of antibiotics. It was also quite difficult because I was throwing up every five minutes and I had to try very hard not to throw up after taking my pills. However, the antibiotics didn’t do any harm, though I’m not sure they did any good either. In any event the rash cleared up by itself eventually.So that was that.
I was surprised to get a slightly panicked message from my GP a couple of weeks later. When I called her back, she said that she needed to see me immediately. I zoomed off to her surgery. Most of the tests they had done were rash tests but they had also done standard pregnancy blood tests for the hell of it. In the excitement over the rash tests and the antibiotics, everyone had forgotten to look at the pregnancy blood tests. My GP had just noticed that I had tested positive for CMV.
Cytomegalovirus is commonly contracted from the urine of small children. It is therefore unusual to catch it before a first pregnancy. Women who have not been exposed in infancy, usually get it after their first baby and before becoming pregnant with their second. If you’re not pregnant, the worst it will do to you is give you flu like symptoms and you may have no symptoms at all. If you are pregnant, the effects on the foetus or foetuses can be very serious and there is no recommended treatment. I suppose because there is no treatment, CMV is not routinely tested for in Ireland, the UK, the US or France. I’m not sure what the situation is in other jurisdictions. In Belgium, they do test for it and as my GP explained to me, the standard practice, if you test positive, is to terminate the pregnancy and try again.
I remember sitting there and feeling as though someone had pinned me to the chair with a heavy weight. My GP was saying that though her last patient who had contracted the virus had terminated her pregnancy, she had had other patients who had gone on to have healthy babies. But it’s twins I thought – how could we cope with two handicapped children? How would it affect our little girl? And continued the GP the patient who had the termination was very unstable. I recommend that you continue the pregnancy. I sat up straight and tried to look stable and not burst into tears. She sent me running round the city for further blood tests, all of which confirmed the initial results.
As you will be aware, a little google is a dangerous thing. That night we combed the internet for information. We found a chat room for parents of infected children. My God those poor kids were so sick. I remember thinking that now before they are born may be the only time these children will feel well. Our internet researches also indicated that in the case of twin pregnancies, if one twin got it, the other was likely to get infected also. I felt very guilty. I swear I am a thorough hand washer but if the Princess had not been in the creche, it’s likely I’d never have caught it.
We went to see my gynaecologist together. She is not a panicker and she was as upbeat as she could be. She confirmed the odds in our favour (60% chance that the babies would not be infected) as found by us in our internet researches. She confirmed that catching CMV in the first trimester was the worst time but she also said that this was when the placenta was strongest so this was when there was the best chance of the infection not passing at all. She said that it had been standard practice in the past to terminate pregnancies where the mother was infected with CMV. However, practice had changed and doctors now believed that it was wrong and unethical to terminate all pregnancies on the basis that the infection might be passed on in some cases. She spoke about some of her other patients who had been infected. One woman had a child who was mentally handicapped “she was fantastic with Gaultier, but, yes, it has been hard for her”. I didn’t feel I could be fantastic. She spoke about patients who had had deaf children following an infection and how well those children spoke and used sign language. She said that the previous week she had carried out a termination at 20 weeks on a patient whose infected baby had microcephalus. We discussed having an amniocentisis. This could show that the infection had not passed, however, even if it indicated that the infection had been transmitted to the foetuses, this would not necessarily indicate that they had been harmed by it. One of the particularly unpleasant things about CMV is that, if a foetus is infected, adverse effects may not become apparent until up to 3 years after birth. So the amnio could show that we were in the clear, or not. Either way, we were going to continue the pregnancy and since, apparently, the risk of spontaneous abortion following amnio for twins is 5% (as opposed to 0.5% for a single foetus), it just didn’t seem worth it to us.
We talked a lot about what we would do, if a scan showed serious handicaps. We decided that we would probably proceed with the pregnancy. I had lots and lots of scans and every one of them was an agony of suspense until the doctor uttered the magic words “I don’t see any trace of CMV on this scan”. The scan can’t show everything of course (for example, deafness wouldn’t show) but it was ruling out a really serious and horrific handicap.
I thought about CMV constantly. It lent a certain perspective to my life. The week before I heard the news, the Princess had broken her tooth and I was most put out. I subsequently realised that perhaps a broken baby tooth wasn’t quite the catastrophe I had thought. I went out for lunch one day with a colleague and a very unpleasant consultant he had working for him. The consultant told a series of unsavoury and unfunny jokes about mental handicap. Normally I would have found this
unpleasant, but in the circumstances, it almost reduced me to tears. We reconsidered our plans. We had intended to move home to Ireland in the next couple of years, but, if the babies had a handicap, we would have to seriously consider staying in Belgium for the long haul because education facilities and supports here are so much better than at home. I found myself looking at mentally handicapped children and their parents. How did they cope? How did these children interact with others and, in particular, with their siblings? Things like this made me cry. And people kept asking me “How are the babies?” What could I say only fine but every query depressed me. We decided that we wouldn’t tell anyone except our parents. There was enough misery about and, I suppose, we didn’t want people constantly asking whether there was news or not knowing what to say.
As the pregnancy progressed, I found myself trying to believe my husband’s reassurance that the numbers were on our side and also that he had always lived a charmed life and it wasn’t about to change now. In the back of my mind, however, I kept thinking, superstitiously, that I’ve always been very fortunate and maybe I was due some monumental misfortune.
When the babies were born, the preliminary tests were negative for infection but positive for antibodies, so inconclusive. The boys had hearing tests and brain scans. Everything was fine but that didn’t mean everything would stay fine. The urine tests would be conclusive and they took weeks. I was too scared to ring the paediatrician to find out the results. My husband called,
he frowned, I was terrified. He hung up. “Only Michael’s results are in”. “And?” “And he’s fine”.? Apparently, he does live a charmed life. Our internet research made us feel that if Michael was clear, Daniel was likely to be clear also and last week, Daniel was confirmed as CMV free. I know it’s a cliche but it really was like waking up from a bad dream and realising that it was only a dream. Euphoria is very good for overcoming exhaustion. I recommend it.
I can’t help wishing that I’d never known in the first place which would have been the case had I been pregnant in Ireland, but I suppose it has opened my eyes to an extent to the rights and needs of handicapped children and their parents. I feel so, so lucky. My gynaecologist, who at each appointment regularly chanted her mantra “mieux avoir la merde avant”, had dutifully delivered on her promise of a perfect birth and perfect babies (NOT a promise she would have made in litigious Ireland); we’ve decided to reward her by putting her on our Christmas card list.
on 15 November 2005 at 10:45
on 15 November 2005 at 10:49
on 15 November 2005 at 10:54
on 15 November 2005 at 10:57
on 15 November 2005 at 12:59
on 15 November 2005 at 13:06
Glad your story has a happy ending but it sure makes you wonder what if…
on 15 November 2005 at 13:33
on 15 November 2005 at 14:09
on 15 November 2005 at 15:04
on 15 November 2005 at 15:08
Luck and happiness xxx
on 15 November 2005 at 15:56
on 15 November 2005 at 16:48
on 15 November 2005 at 17:03
on 15 November 2005 at 18:47
on 15 November 2005 at 20:51
on 15 November 2005 at 21:29
(And this post made me well up)
on 15 November 2005 at 23:49
on 16 November 2005 at 08:48