Complications

Before I get into this post, I feel like I should start at the end really and tell you that you a couple of weeks ago we were given the all clear. So, although I have had a taste of what being told there is something wrong with your baby is like and how to come to terms with that, I have to emphasize that is not the experience you’re going to read. I cannot fully appreciate what it must be like to know that the baby you’re carrying is already ill, but I send love and support from the bottom of my heart to anyone reading this who has had that experience. Also, I am not a medical professional so do not take anything I say as medical guidance.

The date of the 20 week scan had been etched on our brains since I had opened the letter several weeks before. This was what we had been waiting for: a chance to see our baby really looking like a baby and to (hopefully) find out whether we were having a boy or a girl. We had told everyone that by the next time we saw them we would know the sex and the discussion of names could really begin. My fingers and credit card were itching to start looking at pushchairs, baby clothes and paint swatches for the nursery. The day of the scan finally arrived and I know that I, at least, found it hard to concentrate at work, always watching the clock for the time when I could get home and then get to the hospital.

We sat in the waiting room, me rubbing my tiny bump with one hand, holding Tom’s hand with the other. At last our name was called. ‘It’s a girl’, I told myself. ‘It’s a boy’, said the sonographer about 20 seconds into the scan. A tear slid down my cheek as I stared at the screen (there was no denying it was a boy, that’s for sure) and I felt Tom grip my hand more strongly. The next few minutes were a bit of a blur as my brain quickly came to terms with the fact that we weren’t having the daughter we had imagined and picked a name out for. As the sonographer calmly went through her checks, I felt something leave my body – I suppose you could say that I had a moment to mourn the loss of the idea of a baby girl – and a new thought entered me: our little boy! Our son! Of course he was a boy! I instantly felt a connection with the baby inside me as I heard him tell me ‘silly mummy, there you were imagining a daughter and here I was all along’. It felt so right.

After a few minutes the sonographer stopped and tutted. ‘Baby is in the wrong position for me to get all the measurements I need. Could you go to the toilet and walk around a bit, please?’ I duly did this and returned to the bed a few minutes later. Unfortunately the outcome was the same: our stubborn son would not move. ‘You’ll need to come back tomorrow, I’m afraid.’ An appointment was made for the following morning and we left the hospital.

I think we both knew that we hadn’t been given all the facts that day and there was something the sonographer was worried about, so when we phoned our families to tell them that they were to have a grandson, we also told them to hold off on the excitement until we had received the OK the following day. The next morning was more subdued than the day before as we both tried to work a little from home before our mid-morning appointment. Soon enough we were back in the scan room with the same female sonographer.

Baby had moved, it seemed, but she wasn’t happy with what she saw. Every time she took a measurement of the left ventricle in baby’s brain, it was coming out a little larger than normal. She quickly told us that ideally it would be under 10 (mm? We’re still not sure), that 10 was borderline and our baby’s was measuring anywhere between 8.5 and 10.5. She had decided that she would need to refer us to Birmingham Women’s Hospital to have a more detailed scan with a consultant.

The next thing we knew we were sitting in a room with a sofa and a plant on the table. Next to me was a leaflet on coping with cancer and a box of tissues. I realised this was where they told you something was wrong with you or your baby and I started to panic. We sat in near silence waiting for a midwife to come in and tell us what was going on, not really believing that this was happening. The midwife arrived and explained in more detail what the sonographer had seen.

‘But what does that mean?’, I asked, not really wanting to hear the outcome.

‘Well, if the ventricle is larger than average then it could mean a range of things. Firstly, you could have picked-up an infection that has caused the enlargement so we will take some blood now to rule that out. It could be that it’s completely normal for your baby or that the difference in size will work itself out as he grows. Or it could be a sign of a chromosomal disorder such as Down’s Syndrome or Edward’s disease. If it is the latter, then it will not be conducive to life.’

That was the phrase she used: not conducive to life. Our baby could die anytime between now and a few hours after his birth if he had a particular chromosomal disorder. That was the news we were given there, in that room.

The midwife, seeing that we were following what she was saying very closely as Tom works with DNA, explained further what these disorders meant and how they were caused, what the process of checks and tests would be if one thing showed something… I could go into detail about possibly having to have an amniocentesis etc., because I’m pretty sure I will remember everything from that half an hour in that room for the rest of my life, but I won’t. There was only one thing we were concentrating on: please don’t let our baby be ill.

We got into the car in a daze and I phoned my parents, keeping calm and explaining the facts: we had a detailed scan booked in Birmingham the following Friday, 21st December, when we would hopefully find out for sure what was wrong and what was going to happen next. I kept it together until we got into the house when something I have never experienced before came over me: a pure love and fierce need to protect my unborn baby. I collapsed into Tom’s arms and cried like I have never cried before, right from the pit of my stomach, howling that I didn’t want our baby to die. At that moment I would have given anything for confirmation that he was going to be alright, I didn’t care about myself one little bit. All that mattered was him.

After we had composed ourselves, we both called work to say that we wouldn’t be coming back in as we had had some bad news and cancelled any plans that involved looking at baby things that weekend. I shared the fact that things hadn’t gone so well on Twitter (and received some incredibly heartwarming responses that I will always treasure) and in more detail with our close friends via email. The support we got was completely overwhelming and we felt so lucky to have such loving and wonderful people in our lives, even if it was hard to think too much about it there and then.

The week passed slowly and painfully. I so obviously had something else on my mind at work, but just a mention of the baby needing some more tests was enough to satisfy everyone, which was a relief. Thankfully our appointment was at 9.00 on the Friday, meaning we didn’t have to wait around worrying ourselves further that day.

The staff at Birmingham Women’s Hospital were absolutely amazing: from the receptionist telling off the naughty babies that weren’t co-operating in their mummies tummies, to the nurse who quietly printed off three copies of the perfect profile shot of our baby to keep and give out, and the consultant who gave us just the information we needed to hear. The whole experience was made so much better by their fantastic care. And so here’s what happened on that day:

  1. Detailed full scan, top to bottom. Consultant confirms everything else looks absolutely fine. Baby is exactly the right size, etc. But, he can’t get the shot of the left ventricle because of the baby’s position so we are sent off to walk around for 15 minutes.
  2. We return. Baby is still in the wrong position, with the skull causing a shadow over the ventricle. We go off again to have a bacon sandwich to see if we can get him to move.
  3. Guess what? No movement. This time the consultant calls it a day and we are taken into another of those rooms where they give you bad news. We firmly hold each others’ hands.
  4. The consultant is positive: he feels that everything is looking fine and that the worse case scenario is that the ventricle is measuring borderline. This would mean that, at worst, our baby would have learning difficulties that could range from mild dyslexia to a reasonably severe difficulty with reading and writing. No amniocentesis needed (phew, my worst nightmare) and he was willing to ask us to come back to try again in 3 weeks before booking me in for an MRI – the only guaranteed way to get a clear picture of the brain.

We were given an appointment to come back, thankfully after Christmas and Lucie and George’s wedding and told not to worry too much. A definite relief, but, of course, we still felt like we were not out of the woods yet.

The first week back at work after a long Christmas break and I had to have my 24 week check with a consultant at our local hospital as I had been moved up to high risk pregnancy. This was a horrible experience, made so much worse by the fact that our treatment in Birmingham had been so good. This consultant was dismissive, didn’t give me any chance to ask a single question, and told me I would kept on high risk but not what that meant. In fact, it wasn’t until I went to the desk to book my 28 week check that I realised that she had decided I needed a whole other series of tests, seemingly for no reason. Great fun.

Luckily, returning to Birmingham just a couple of days later was another good experience. As we had expected, baby was in the wrong position as the same consultant started another detailed scan (confirming everything else was still fine), but through a stroke of luck, baby then decided to do a full turn and show the left side of his head to the nice doctor right on cue. Approximately 4 seconds later, we heard the magic words ‘it’s all fine’.

Back into the dreaded room and he explained to us that the measurement of the left ventricle was completely normal – not even slightly borderline. As long as we were happy not to have an MRI, he was happy to sign us off. He even hinted that he didn’t think there had been anything wrong the whole time, just that the original sonographer had been unable to get a clear measurement so had panicked. Hmmm… We’ll try and ignore that, then. Happily, we skipped-off to the car and drove home, discussing baby names the whole way. My Mum, sister and 3-year old niece were arriving later that afternoon so we were able to celebrate the news that evening and then finally allow ourselves to buy some things for the baby by getting the pushchair the next day. It felt amazing.

So, what now? It certainly took time for us to get over this experience. I am really hoping that following my 28 week check and associated tests/extra scan, which are this week, I will be put down to low risk again and we can completely move on. Whilst I am ecstatic that we now know that our baby is as healthy as he could be, I don’t think I will ever fully decide whether I’m pleased that one person’s slight worry turned into such an ordeal for us. After all, what she did/didn’t see is probably something that not that long ago wouldn’t have been able to have been checked at all. Ultimately, had the worst case scenario come true, what decision would we have had to make? Basically, only to bring forward the inevitable, which is no decision at all. The whole thing has left me with an even deeper love for the NHS, but a dislike for the idea that when you are pregnant it’s no longer your body: why would I question the need for extra tests? Why should I need an explanation to tell you to take another day away from the office (at least I haven’t experienced any problems with taking paid time off to attend my medical appointments – my work have been amazing) for something we earlier told you you wouldn’t need? (I am now talking more about yet another injection that I’ve got to have that is unconnected to the possible complications we had, which I will talk about when it has or hasn’t happened.)

Who knew pregnancy would be such an emotional roller coaster, and that parenthood would start before our baby has even been born? Oh, every person who has ever had a child ever, right, I see.

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10 thoughts on “Complications

  1. The realization that your body is not yours, or more precisely, that you don’t control it, along with not having a say with whatever the doctors decide…. has been terrifying. I am not pregnant (just trying, and pursuing fertility treatments) but if there is one thing I have learnt, that’s that. Also the fierce love you feel, maybe it’s weird but I already deeply love our future baby, I know it will come, and I just wish it was not so stubborn to “make”.
    Anyhow, I am so so glad to hear that your baby is fine and that there is nothing to worry about. I do wish sometimes doctors would take more time to explain what and why they do, and this of course depends on who you get. Some doctors are great, some have a ‘colder’ approach, I guess it’s also a personality thing (and they are subject to time constraints and productivity bs as well).
    So happy for you, and I hope that from here it will all go smoothly.

  2. The fierce love and need to protect never actually leave you it’s just that the baby they are centrered upon becomes an independant and amazing 27 year old whose having a baby of her own.
    I didn’t realise just how much I was holding my breath until you gave us the amazing news that everything was fine and realised that I could now breathe easily again.
    Can’t wait to meet the little scamp and give him a piece of my mind :o)
    Glad to see that you’re writing again!

  3. I feel the same about all the tests, especially the extra ones that the Internet suggest. I have faith in the NHS that the screening tests offered to be have more benefits than drawbacks from false positives etc and that those that aren’t offered is for a reason. Group B Strep tests seem to be gaining in popularity but a postive result could just mean I am unnecessarily connected to a drip throughout my labour and me and my baby given antibiotics that probably weren’t required. It’s scary the decisions you end up making as a parent before the baby has even arrived yet, I was in two minds about the NT test because deciding on something as serious as an amino based on a probability seemed horrible!

  4. I am so so glad everything is ok Esme. I thought of you constantly whilst it was going on. It must have been terrifying.

    I just wanted to chip in with my experience of the ‘unnecessary’ tests, particularly Strep B. Had I not been started on precautionary antibiotics to treat possible Strep B (it turned out I had an extreme case) when my waters broke at 21 weeks in the summer, my husband may well have lost his wife and his son on the same day (confusingly, it wasn’t the Strep B that caused the loss of our baby).

    In normal circumstances Strep B can be very dangerous to newborns and I will be treated regardless in any future labour. To be frank, I would rather take unnecessary antibiotics every day because of a false positive than say goodbye to another baby.

    • I hope my comment didn’t seem insensitive, it’s hard to know which way to look at what can turn into horrible situations. I suppose what I meant is I try to trust that the doctor’s decisions about what is required is the right one as it seems there is a never ending list of things to worry about. So not that the GBS test is unnecessary just that it might not be necessary for 100% of people (and that might not have been the best example, my Dr advised against it which was why I mentioned it).

      • I think I had a very emotional response as it is so personal to me.

        You’re comment wasn’t at all insensitive, I am just super sensitive! Xxx

  5. I’m so glad all is well with baby Wilks! I no what your going through they sent me back to the hospital so many times because they thought the baby wasn’t growing or one time because the heart rate was low, turns out the midwife had got my heart rate and Lucy was a small baby with very little water but perfectly healthy! So fingers crossed for a smooth next few months and a smooth birth! Really looking forward to another baby in the family x x

  6. I agree with the importance of the Strep B tests. We lost one son at 29 weeks and because our next baby was born at a different hospital no connection was made and we had Daisy again at 29 weeks. Luckily she survived and is now a strapping and very expensive 17 year old.

    Strep B is the commonest reason for premature birth in the UK. I really don’t understand why the NHS don’t test for it routinely in all women, it seems that in some areas you have to pay if you want it.

    I have left it up to Esme and Tom to decide if they want to have the test but she is VERY aware of the dangers.

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