Friday, April 25
I stopped writing this blog for a while because I couldn’t think of anything to say, and that’s not like me. I wanted it to be happy, but there’s only so many gloomy consultants you can see before you realise how dismal things could be, and you just lose the urge to type. It’s tough for me; for Emma, surrounded by toddlers and young children every day, it must be unbearable. Our life has been in stasis.
A quick word on my employers Johnston Press. I leave there on Wednesday, after nine pretty happy years. I am taking enhanced redundancy, and – not to sound big-headed – picking up freelance work has been fairly easy. But it has been made easier by an act of kindness by the company.
My original leaving date, like many others leaving the company also taking redundancy, was March 28. But when our world caved in at the start of March there were people at JP who heard about our situation, and gave me a month’s extension to sort myself out mentally, a platform while I worked a few things out, and support and a base to meet my workmates who have been great for me. In the grand scheme of things, it is a small act. It is one that helped us enormously, and will not be forgotten when my former employer’s name is brought up in conversation.
Yes, we have been on the ropes. Today, a visit to two hospitals in Nottingham marked the chance for life to deliver the knockout blow.
In actual fact it would in the end mark the dramatic, fighting comeback – for all three of us.
I put on some Oasis before I left this morning, amid rumours they are returning for Glastonbury. The last song I played before leaving for Nottingham City Hospital was from the average Be Here Now album. All Around the World finishes with ‘And I know what I know, it’s gonna be OK.” Why I’ve suddenly remembered that I don’t know, it’s one of those little particles of life that sticks to your brain and only gets shaken into the compartment marked ‘memory’ when you sprinkle a dash of something called ‘hindsight’ into the mix.
Let’s skip forward, in a rain-soaked, crappy drive along the A1 and A52, to the hospital. The parking is appalling and I seriously thought I would have to sit in the car while Emma went in for the scan. Thankfully a couple pulled out of a gap and I swerved in like Nigel Mansell on cocaine, which is a really weird simile but it’s the best I can come up with while I rush ahead to the better news.
We waited 20 minutes for the appointment. Our doctor, Lucy Kean, is a kindly schoolmistress type, rather bookish but with the best bedside manner you could imagine. Having said that, if you are to have bad news it doesn’t matter how friendly the person is who will deliver the words, it might as well be a 20 stone barroom brawler. So I couldn’t return her smile as we went into the ultrasound room.
Emma lay down and and the little machine was pressed against her belly. The last time we had been here that machine showed a gap of 14 to 15mm in our baby’s brain, filled with fluid, representing high-moderate to severe ventriculomegaly, and cruel things.
This time Lucy remarked immediately “Well, they certainly haven’t got any bigger…in fact…11mm”. I had noted the measurement before she even said it. I had noted the shape before she said it. All my reading at 3am came back: 11mm is just over the normal threshold. We are now at the low end of ‘mild’ Vm, and babies with this measurement are perfectly OK 90-95 per cent of the time. The ‘poor’ prognosis can be replaced with ‘excellent’. The size of the swelling can fluctuate, but normally, once the ventricle sizes start dropping they continue to do so. Had we gone next week the swelling may have disappeared completely. All other measurements are normal, and our baby weighs 1lb 4oz. Lucy even tapped Emma’s knee – you could hear the surprise in her voice.
We didn’t cry. The smiles did all the emotional bit for us. It isn’t over yet, but it’s a massive step. We went on to QMC for the MRI scan, which will look at the overall brain structures. We have to wait for next week for results, but I took a quick look at the scans on the way out, and they looked fine to me.
We can breathe and sleep more easily for a while. More tests lie ahead and we will take nothing for granted, but we now know that our child is a fighter, and that even if this evil returns it can be dealt with, and banished.
One other thing – It was confirmed for the fourth time today that she is a girl. And we can confirm that her name will be Eliza Florence Baker.
Monday, April 7
I haven’t written anything for a while so I thought it was time to update people on our current situation.
Since the last blog we have been to Nottingham again, for the results of our MRI scan and a talk about what the results mean. Everything so far – chromosome, blood and brain structure abnormalities – has come back negative, which is obviously good. As explained before, an isolated case – one where there is no apparent cause or underlying factors – is better than one where there are associated problems.
But the odds are still not great. Our girl’s vents measure 14-15mm, shown in the unusual scan above as the white space. Thousands of babies have been studied across the world with varying levels of VM and it is possible to therefore construct crude statistical-based percentages, of what it could mean. Roughly 77 per cent of babies with 12-15mm vents are normal, meaning 23 per cent have some form of problem. Around half of babies with 15mm or more have a problem. So we are somewhere in-between the two. And ‘problem’ could mean anything from a slight developmental delay to severe, life ruining disability.
Our doctors have been very good, but the brain is an incomprehensible object, in that the effects of abnormalities cannot be predicted based on shape or size. The only things that can be said are that the vents must not grow any more, otherwise a grave situation darkens further. We will find out if this is happening in a week or two, while the next MRI will assess if the brain is ‘wrinkling’ properly, as is normal in development. It will also look for renegade or malformed cells. If the three factors are all present – larger vents, lack of wrinkling, and bad cells – we will most likely have a decision to make. The hardest decision.
Our doctor had presumably heard one line of reasoning from parents before – let the child be born, and their own natural problems will probably lead them to die naturally if they are disabled.
It takes the decision away from the parents, and therefore the guilt. But it isn’t as easy as that, because babies are tough. Some parts might not work properly but the other parts try and compensate, and keep the baby going. Therefore, as long as the brain is keeping the lungs and heart alive, the body will function – and parents then have an obligation to care for their child.
My language might sound harsh, robotic. It’s the only way I can write it. My thoughts have changed in quality and direction so many times, back and forth, at all hours. I don’t wish to apologise.
At times I have walked through Peterborough looking at children, seeing some with disabilities, and thinking ‘well, that’s not so bad’. ‘No I wouldn’t want her to have that problem, but that one’s alright’. And so on. Comparing, contrasting, visualising care for a child that isn’t even born, and for whom we have no idea of their prognosis. They are horrible, weird thoughts.
We have a little cot bed, purchased a month or so ago. It isn’t built. Her clothes are hanging in the wardrobe. There’s a blanket or two here and there. But we are well behind where we would have been if that scan on March 14 had been normal. I don’t want to go shopping any further, although Em is desperate to spend. I keep getting regular updates from the NHS, group emails sent out each week for expectant parents on a range of baby-related topics. I don’t even open them. I thought we were meant to enjoy pregnancy.
It tends to be that when I’m down Emma is optimistic, and vice versa. Emma cried a lot on Saturday morning while I felt OK, so I tried to reassure her. I largely reserve my darkest moments for the middle of the night, or walking into work. My freelance career has been put on hold for another month as the newspaper have kindly agreed to keep me on for another month until I sort myself out – much needed time. Friends and family have been amazing.
We still, in the pit of our hearts, believe this baby will be OK. In our lives things have usually turned out alright, and I am clinging to any hope I can get. And one of those morsels is the luck I am going through in my football bets at the moment. I had £3 left in my betting account just over two weeks ago. After some outrageous fortune – including one game in Gillingham where a team scored twice in the last four minutes – my football accumulators have yielded £320. So maybe our luck is changing.
One way or another the end of April is going to be memorable.
Friday, March 21
The last blog posting on here about my late father was pretty sobering stuff, but with the 20-week scan coming up I fully expected to soon be writing a fun piece about seeing our baby on the screen, finding out its gender and throwing about a few names, putting up another scan pic, and generally lightening the mood. I was told off by the midwife for using my camera and struggling to sit still. I was embarrassed, but that will be a funny line in the blog, I thought at the time. How wrong can you be.
The last week has aged us. I am already feeling tired, and it’s only 7pm. We are not sleeping well, and – particularly in my case – we have only just started eating properly. Concentration is difficult for even the smallest tasks. The expanding pain in my ribcage will not go, it is partly physical but much more psychological. Anxiety, dread, anger, even guilt, pushing at my chest from inside. Good news will get rid of it, but we’ve only had the merest morsels to feed on so far.
In nine years as a journalist I have written about cancers, heart complaints and conditions, disabilities, injuries, transplants, organ failures, and many other of the frailties of the human form. Yet the word ‘ventriculomegaly’ was one which had not entered my consciousness, or at least if it did, it was fleeting.
It made its arrival in our lives at around 10.10am last Friday. If I Google it now every link for the first eight or nine pages is purple – previously visited, all in the past week, sometimes several times. Add the word ‘severe’ to the search, and it is only the first five or six pages. Still too many.
The brain has a number of ventricles, holes which fill with cerebrospinal fluid as it swills around the brain. This fluid is a good thing, a cushioning agent. But in some people – such as our little girl – it doesn’t flow properly, doesn’t drain. So it pushes into the ventricle and fills it, and then pushes some more. The brain tissue around it is stifled. Maybe the tissue never grew properly in the first place, so the fluid just filled up the expanded gap.
Typically in a baby of 20 weeks the width of these ventricles is less than 10mm. The term for a larger gap is ventriculomegaly – 10-15 is mild to moderate, anything larger still is severe. Our girl was severe. There is no treatment. Less than 1 in 1,000 babies are affected.
The midwife at PCH had seemed very tense, almost from the moment she looked at our girl’s head. I was told off at the point she looked at the brain. She didn’t say anything immediately, and continued to look at the heart, kidneys, hands, feet, and the other organs and bones. All fine. She asked if Emma had been well, and particularly if she had suffered from infections. We said no. She looked at the spine, which was fine. I can’t remember the exact point at which she said that she had concerns, but our tears flowed almost immediately. We were then told that it was a girl. Emma cheered, I did nothing. Another midwife was called in to give a second opinion, and she agreed there was an issue.
Before we had gone in there was a girl, maybe 14 or 15, who was going in for a pregnancy scan, accompanied by her mother. I felt sorry for her. I suspect the tables turned when she saw two red-eyed desperate parents-to-be emerging from the room.
We were told to wait for a consultant, who would be half an hour or so. We rang people, we cried, we had a cup of tea, walking round the hospital but not seeing or noticing anything. The consultant eventually arrived, and told us that from now on we would be taking trips to Nottingham to be looked after by experts. It was possible that the fluid would shrink and even be normal by the time we were next seen, and everything would be OK.
It wasn’t said at the time, but brief online analysis showed that the alternative is that our girl could be permanently missing parts of her brain. She could be born deaf, or blind, or severely physically disabled. She might be permanently trapped in the condition of a two or three month old child. She might never speak, or be able to swallow, or breathe properly. She could die soon after birth.
We went home and told my mother. And then went for a walk in Ferry Meadows. Emma was trying to be upbeat, I’m no good at that. We got the call, telling us that our next step was an advanced ultrasound on Wednesday.
I looked online at stories. Some were positive, others horrendous. We had no idea what was going to happen, no idea what experts would be looking at, no idea why it had happened. Em had eaten well. she doesn’t smoke or drink, she’s exercised, and done everything right.
We told people on Facebook what had happened, and the response was overwhelming, and continues to be. But none of them know how it feels. I know people who have had fertility issues, or difficult labour – but not difficult pregnancies. What can they say? Only that their prayers are with us, and that is good to hear.
We had five days where we didn’t live. I haven’t cried in many years, since my dad passed away – I made up for it this week. Emma still spoke about going to Kiddicare to buy clothes for baby, and toys, and bedding. I didn’t want to know, and she didn’t go. Shamefully, I stopped speaking to the baby, shied away. I didn’t want to give up on her, but at the same time felt sick thinking about her.
On Wednesday we went to the wrong hospital, QMC rather than City. It might have been mildly humorous at other times, but at the point where Emma was crying in desperation in front of the ‘wrong’ receptionist, humour was the last thing in our mind. We made it, late, and Em went in for her scan.
The ventriculomegaly is now ‘moderate’, 14-15mm. There are no apparent spinal problems with the baby (we knew this anyway as she kicks Em regularly) which is a relief as spina bifida is a common byproduct of the condition. So is hydrocephalus, but our baby does not have that either, as the head size is normal.
Our doctor Lucy Kean – a wonderful headmistress-type, bubbly and witty with a magnificent patient manner – ordered three tests, for which we have no results.
The first was an advanced blood test, which will look for infections that could possibly cause a blockage in the brain. This is regarded as very unlikely.
The next test is an amniocentesis, which entailed a drawing of fluid from the womb through a giant needle. That fluid will be tested for chromosomal disorders associated with Ventriculomegaly. There are numerous possibilities, including Down’s Syndrome – but again these are unlikely. For a start, most of them come with a physical disfigurement which is something our baby doesn’t have. Some of the tests are very quick to administer, others take a couple of weeks.
The third test is the most complex, and we did this today. Another trip to Nottingham for an MRI scan – Magnetic Resonance Imaging. Emma had to lie down while electromagnetic waves were pumped into the womb in stages from multiple angles, which could then be combined to create a 3D image of the baby’s brain, rather than the 2D limits of an ultrasound. It will look for missing parts, misshapen parts, and diminished parts. The scans so far indicate that everything is in place and the MRI will confirm it – we hope.
If all of these tests are negative, and there are no abnormalities, the likelihood is that we will find no cause. And curiously this is a good thing, as it will mean that the Ventriculomegaly is ‘isolated’, and babies with isolated cases tend to have a far brighter prognosis. So we are hoping for blanks.
I asked what the best case scenario is, and was told that we could have a completely normal and healthy baby, even if the vents don’t shrink before birth. I didn’t ask for the worst case, because I know. Legally, we could choose to have the baby terminated a few weeks before birth. We are trying not to think about that, but the knowledge is there, unspoken.
This baby would be even more special to us than if it were ‘normal’. We have to hope and believe that it is special enough to overcome odds that it has no idea it is facing. We have to be strong, and not let our lives stagnate. We have to rest and sleep and eat and go out. The scan of our girl is beautiful and we have to cherish that. However this blog has now changed direction, and we are no longer at the steering wheel. Fate is the driver.
All I want is for our child to have a chance at a normal life, and if that means she has to fight to get there, then so be it. I’ve watched enough boxing to know that there are some fights you just can’t win. But sometimes there’s an upset and an unexpected and heartwarming result, and that’s what we are praying for.
Tuesday, March 11
So the big scan is on Friday, when we find out whether the Bakelet is Bessy or Bertie. It’s a massive scan at the PCH and I do have a lot on my mind at the moment. Most of it is good, but it’s a sad anniversary for me this week, as it marks five years since my dad died. The picture above shows mum and dad, and me and Christopher. I wrote something at the time which I found the other day, I don’t think much sums up the dreadful weekend that he passed away better than the words I wrote then, which I have recreated here.
I had been leaving the Coventry – Chelsea FA Cup quarter final and about to get on a bus into town when I realised I had a message on my phone. I listened to it. Sadie said ring me urgently. I did, and she said she would call me back. She did. She had had to call me back because she was in a hospital. My Father had collapsed at a lecture in Lincoln and had been rushed to the County Hospital where he was in intensive care with a bleed to the brain. It wasn’t good.
I put the phone down and just told Emma that we needed to go to Lincoln, a 75 mile journey. Emma, her uncle and his friend looked at me quizzically, and really I had no idea what I was saying. The enormity certainly wasn’t entering my brain yet.
We got, eventually, to my car. M69, M1, A46, and we would be in Lincoln. The journey was gloomy and terminal as the thoughts rattled around. Would he live? If so, would he be damaged? Where were the rest of our relatives? Would he survive until I got there? Although I knew very little about what had happened and was really just floating along in the car with a painful lump in my throat inwardly I knew the answer to these questions.
The weather was bleak, the sky greying. My brother were outside when I arrived. I cried for the second time. David told me that he was under sedation and this would be taken off the next morning – if he didn’t wake then, he never would.
We went in, through a security door were you had to ask to be let in. We would have to do this again probably 20 times in the next 24 hours. No other occasion would hurt me like this one.
Dad was on the bed, eyes closed but looking directly towards the curtain entrance. A huge tube was snaking from his mouth and two other smaller pipes crept from his nose. He was wearing a grotty yellow smock. Machines beeped and pulsed behind him. I cried again, a sickening, straining crying.
A nurse told me something or other about him having life-threatening injuries, which were inoperable as they were clustered deep into his brain where it meets the spinal cord.
This was not a surprise. She said that if he did come out of the medically induced coma – and this was no more likely than not – it was not likely that he would come out in an “appropriate fashion”. That meant brain damage.
So we sat, and watched. He didn’t move at all. Nurses came periodically to inject, and wipe, and swab, always addressing him by first name before performing an action. Quite sweet.
Em and I were tired so we tried to imbibe as much caffeine as possible. The tea was fairly hideous but temporarily soothed a desperate pain, that of a swollen throat and a heart that knew, in its core, that my Father was going to die. I didn’t eat.
The nurses turned the lights off in the ICU as nightfall came. Other people were lying there. Another younger man was the only one like my dad who wasn’t moving at all. Others breathed in a troubled fashion through oxygen masks, or slept. Dad didn’t move. The nurses periodically asked us to leave so they could perform that action for him, rotating him, cleaning him, checking the padded machines connected to his legs were working and he wasn’t suffering circulation problems in his inanimate, useless legs.
Who knows what was in that mind? Was it a mind? I circled the bed countless times, trying awkwardly to avoid the wires. Surely he could hear us. He knew our anxiety, and would react. Surely this figure, this 55-year-old lump of flesh and bone and sinew, was not how my Father would finish his life. Surely it was a matter of time before the 1/2 cup of blood which had leaked into his mind and was straining it to bursting point, would do the decent thing and evaporate or leak away. Surely.
I learned what the figures on the machines were. Blood pressure. Heart rate. Co2 output. Pulse.
At 10pm we went to rest in a Siberian room, on a sagging bed. My eyes evacuated a crumpled contact lens. I got six hours sleep, a whirl of thoughts on disability and my dad’s reaction to it; selfish, guilty worries on the effect on our upcoming holiday to Borneo; financial worries; prayers for my stepmother and brother and sisters. I got up at 5.45am.
We went back and Gail and her sister Marlene were already there. There had been no change overnight. The sedative would be taken off in three hours. More tea. More cappuccino. But no more hope.
The sedative was taken off. Within five minutes dad’s blood pressure had rocketed, his throat gagging as blood surged around the body at an unsustainable rate, his head screaming crimson, until the sedative was replenished. I was not there and am eternally grateful.
The consultant arrived at 1oam, starting at the other end of the room, slowly gliding round the ICU and examining the other patients. I listened and learned nothing. Dad’s blood pressure had crept up again after dropping off. We were told to go out while he was examined, and sat in the front foyer.
We came back an hour later, perplexed. Maybe a new angle on his situation had been revealed. Maybe the blood had gone. Maybe there was hope.
The consultant called us into the relatives’ room. A tiny room where terrible words would swirl and haunt.
They were to turn the sedative off, and one of three things would happen. His blood pressure might rocket to the ultimate, causing heart failure and death within minutes. Or somehow his body would stabilise and his blood pressure would lower again, and his heart would beat and he would breathe for a brief period as the ventilators were removed, until the part of his brain that was damaged – which controlled breathing – ceased to function. This could be brief. The third option was that he might breathe indefinitely until he died of an infection to the lungs, or even hunger. All three options – the only three possible – would lead to the death of my father.
Gail’s crying will live with me forever. Emma cried. I just sat still. I asked why it had happened. We will never know the true answer. A weak artery from birth. An abnormal vein. Who knows.
I went back, and the same vacant shell was there. However where there was hope 21 hours before, now there was only despair. The same figure. The same beeps, the same bed, but with a human facing extinction.
I kissed him. Touched him. Touched his psoriasis, one of the things I would never normally go near but one of the things that made him him. And then Em and I left, and I turned and looked at him for the last time.
He died at 4am on the Monday morning.
It was a weekend that will never be repeated, thankfully. How can you go from a weekend where you’re going to kick the backside of a Premier League team to sitting in a fruitless vigil at the bedside of your dying Dad? It still doesn’t seem possible that someone who rescued me through my teenage years, and helped me through University, and always saw the best in me in those times, can never be there to see my children, or marriage, or career grow. I also don’t speak to any of the other members of my family mentioned in this story any more. Times change.
So we will enjoy Friday and seeing our son or daughter again, but I will think of dad.
Monday, March 3
A long blog today as I haven’t done one in 8 days. That’s mainly because not much has happened. We haven’t bought anything. Emma hasn’t puked. We did nothing much over the weekend, except move our room around a little so that a cot can now fit in. That involved moving an old wardrobe door out, throwing away boxes and general crap. Under the bed I found a picture of two cats of mine which died many moons ago, some tickets and books of little interest, about 15 scary leads, and bizarrely a pornographic DVD which I’ve genuinely never seen before. Who knows?
Screams are coming from the front room, like banshees in an eternal pit of damnation. I’ve closed the door.
Emma is watching One Born Every Minute, and I can overhear horror stories. One woman told a grisly tale of her first baby’s birth, a 48 hour labour followed by an emergency c-section. Joy. Emma and I have spoken about a water birth as a possibility and it looks serene and placid, except that in this version a husband is perched at the edge of the pool with his iPad recording every ripple, sigh and murmur. Far be it from me to instruct them on birthing etiquette or conversation topics, but they have just had a chat about how he’s ordered their engagement rings on eBay, and he’s waiting for the right moment to pop the question, although they have clearly both decided that they will be at a restaurant, and he will song a song to her at some point during the night before it happens, which will be Lady In Red. How spontaneous, and how utterly ghastly. Any time a girl is telling you the conditions that must be satisfied on the night that you ask her to marry you is the time to think about grabbing the parachute and getting the Dickens out of there. Still, I have no room to criticise. Emma asked me to marry her, in bed, after a heavy night of ale in Coventry.
The TV sends forward a moan of such power that it curdles the blood, the milk in our kitchen, and all other Earthly liquids within listening distance.
On March 14 we find out the sex of Baker Jr, and we are trying to guess beforehand. Emma sent me a link to some Old Wives’ Tales, so I thought I would pick out five at random, read them, consider them, tot them up and then see which sex is on top.
1) “If you get a línea nigra (Black Line caused by hormones ) and it runs from your pubic area to your belly button only, it’s a girl, and if it goes all the way up from your pubic area to the bottom-most part of you rib cage, then it’s a boy. ” Em doesn’t really have a line, just a fold of fat with a ridge in the middle, like an musty old bean bag. That doesn’t sound too nice I know, but I still love her. Still 0-0.
2) “If you are carrying low, it’s a boy, or if you’re carrying high it’s a girl”. As discussed, Em’s belly doesn’t really have either shape particularly. The concept of ‘high’ for a 4ft 10inch woman is fairly ridiculous anyway, but she says it’s definitely lower, so that’s a boy then. 1-0.
BTW – another roaring, gnashing, angry, almost vengeful scream, a birth evolving into mass genocide by the sounds of things.
3) “If you combine your age at the time of conception with the number of the month you conceived and the resulting number is odd – then it’s a girl on the way. If the resulting number is even, then it’s a boy for you” So to add to great mathematical triumphs such as Pythagoras’ Theorem, the Fibonacci sequence and general relativity, we now know that if you’re 25 or 37 or 79 and you want a baby princess you’ll have to hold off your lovin’ for January, but it is going to be one frisky February. Nonsense on a grand scale of course, but for us the magic month was October and Em was 33, so that makes 43 and a one-way trip to Girlsville. 1-1
4) “If your feet get colder than they used to pre-pregnancy, it’s a sign you have a boy on the way. If your feet are the same, then it’s a girl!” Emma has poor circulation, and hence her feet are always colder than a Kelly Hoppen stare. When we went to Norway she would go out bare-footed because the snow was actually quite warm compare to her dreaded sub-zero hooves. So from someone who has felt those frozen clods of pure ice press against his shin in the middle of the night, bitter to the point that they almost stick to my flesh, there is no way they can plummet even lower. 2-1 to the girls.
5) “If your skin is dry, you’re said to be having a boy – and if it’s soft, then a girl is on the way.” Emma’s skin is pretty good generally. Mine is terrible without moisturiser, like a pink pork scratching. However, I shouted the question, and the reply – or at least what I could hear between a desperately straining woman uttering a frightening bellow of power like an angry bear attacking a pile of tourists – was that there has been increased dryness. 2-2.
I could go on, but I fear that the two ends of the scales will tilt one way then the next, lifted and pushed down by the pregnancy gods, and my quest for the truth will remain unfulfilled. That’s a mythological way of saying its a load of old *x@%&#. We’ll just have to wait 10 days!