REVELATIONS AND REVELRY

Hardly. Girl Sunday Afternoon, more like…

I’ve been separated from my husband for a while now and I thought it was going ok. You know, that I was managing and stuff. No one’s died, no one’s disappeared and the house is still standing – I’m doing good. Well, acceptably, at least. I’ve certainly adjusted to having no one to empty the bins or mow the lawn or generally take over where I leave off. It’s been a real learning curve – and crash course in survival sometimes – but so far, so good I was thinking last week. I’d handled most situations alone and competently, so I thought I was pretty safe in attempting some housework. Just sort of tidying and dusting, nothing too in-depth, Level 1 housework. I’d done the school run, removed the socially-acceptable clothes that I wear in the playground and replaced them with grubby, house-cleaning clothes – of the sort that no-one can ever be allowed to see. I cleaned for an hour then went outside to empty the vacuum cleaner. And that’s when it happened; just as I was leaning over the bin, shaking out all the bits of goodness knows what disgustingness, I heard my front door slam shut. And it’s one of those doors that when it’s shut, it’s locked. Of COURSE it is.

I froze and began to take stock of my immediate situation. I was actually LOCKED outside. In what were essentially workhouse clothes, with no shoes, no phone, no keys of any description and my car was locked. My neighbours, who by a horrendous quirk of fate and poor decision-making are also my ex-in-laws (I know, I know, you can’t make it up), are the only people with a spare key and they were out. Or abroad possibly, I had no idea. I felt the horror. I nearly tasted it – there was a pan of pasta boiling away on the gas hob. And the dogs were shut inside too.

My next thought was to panic slightly because I had no way of getting to the girls at pick-up time. No one else in my road was at home; I was truly alone. So I panicked briefly, felt a bit better, then stood back and regarded by options. Oroption, really. There was one (very) small window open downstairs, so I thought – I’ve absolutely got to get through that, I have no choice. I climbed hastily onto a large stone in the flowerbed and contemplated the window ledge gingerly – it was literally covered in spiders, egg sacks and webs and all manner of things that I would usually run a million miles from very quickly, but on this occasion I had to ignore them. Somehow I hauled myself up onto the window ledge, clung on grimly like some kind of spider monkey, and tried to squeeze myself through the tiny window. I got my arms and head through with no problem but round about my rib cage it suddenly went wrong. I pushed and tried, I really tried, but I have a full complement of ribs so in the end I had to give up for fear of becoming wedged in the window, which would have been both embarrassing and counter-productive.

However while I was up there, lying flopped over half in and half out of the window like an old fish, I did notice that my keys were lying on a table just below said window and theoretically I could hook them with a large stick. Bingo! So I wandered around my ex-in-laws front garden for a while looking for a stick, but these people are fearsomely keen and competent gardeners, so of course they wouldn’t leave something like that lying around. But luckily they had some plants growing up and around a trellis like thing, which I ripped out of the ground, and pulled apart, hoping one of the legs would reach the keys. It didn’t. Not by a long shot.

I went round to the neighbour on the other side to see if his garden gate was open with a view to climbing over the fence, but it was firmly locked. So then I thought that my only option was to climb over my bedroom roof (which is a garage conversion) and into my back garden that way. I climbed onto my car and from there onto a bin (by now it’s been about 15 minutes and goodness knows what any passers-by were thinking) but as I stood there on top of my bin in my bare feet, I realised that:

a) the guttering wouldn’t hold my weight

b) the roof itself was a lot steeper than it looked. The cat can manage but that doesn’t necessarily translate to its owner

c) it was possible to do myself serious damage

I got down again, wandered around my ex-in-laws front garden for a while, then stood staring rather hopelessly at the house and wondered what to do. At that moment the smell of burning pasta began to float out of the tiny window, and I realised that pretty much my only choice now was to smash another window to get in so the whole house didn’t burn down. I looked at the large stone and contemplated which window to smash. They are all double glazed so it basically made no difference. But large or small? Front door or the side of the porch? But as I prepared to do it I suddenly thought about my ex-in-law’s fence on the other side to the one between our gardens. That was but a mere barrier – perhaps I could get over that! And then therefore through the shared gate to my back door. I scampered excitedly round to the lane down the side of their house in my bare feet, and thought – yes! I can scale that no problem. I just needed my bin. The only problem was that the bins are kept with my car parked in front of them. Sometimes there’s a gap I can wheel them through but of course on this particular day the car was parked in such a way as to prevent me from getting the bin out at all. So, fired by adrenaline, I lifted the (full) bin clean over my car and wheeled it round to the lane. In my bare feet and workhouse clothes. If anyone was watching by this point they would definitely be thinking oh there she is – the local nutter, but I wouldn’t have cared because once I had clambered onto the bin I was able to get onto the wall, grip it with my toes like some kind of prehensile creature and edge along it until I reached another trellis to crawl down. This was no mean feat but, so close to my goal, I hung onto it grimly and slithered down until I sort of stumbled and fell into their plants, which also happen to be their pride and joy and are the recipients of many hours of tender caring. I squashed a few, but in fairness I couldn’t NOT have squashed them, I had just leapt onto them from a great height. I paused briefly to tweak some petals before jumping out of the flowerbed, running through their garden into mine and through the back door – with no small sense of relief. I rescued the burning pan, collected the bin and sat down, covered in bruises and scrapes, to catch my breath and calm down. Which I did. I drank a cup of tea, made a new lunch and generally sat and congratulated myself on my ingenuity. I could not be thwarted in the face of adversity! Oh no, I really did feel incredibly clever and lucky.

It would have been so easy to panic, burst into tears, beg strangers in the road for help but I had shown fortitude and courage. I had thought out of the box and found a solution. Relief soon gave way to smugness; it was quite a nasty situation to be in and yet I had negotiated it skillfully and successfully. No one would ever have to know. Most especially my ex-in-laws, as the desecration of their front garden was not something that would go down well. Especially after the divorce from their son.

But, guiltily, I knew I would have to give some explanation for vandalising their garden, so I kept checking for the ex-in-law’s car to come back so I could go round and explain what had happened. However an hour or so later it still hadn’t, so I relaxed a bit and went to hang some washing on the line. By some queer twist of fate it was at that exact point that my ex-mother-in-law unlocked their back door and came walking out into their garden.

As I had draped myself through windows, trespassed in their gardens, scaled walls in my bare feet and landed right on top of their plants dressed like a fugitive – she’d been there in the house the whole time. I need only have knocked calmly on their front door.

(There’s a little PS to this story too – firstly the obvious – that housework is clearly far more trouble than it’s worth, and secondly I have not actually confessed any details of this escapade to the ex-in-laws so the first they know of it will be when they read this…)

IVF is a wonderful thing. The miracle that it provides will always be above and beyond most other medical procedures. This is recognised by the team at the Dogus clinic and it’s why they call themselves “Team Miracle”. Because they are. Sadly though, as well as being this amazing thing, the process of IVF will always be a contentious topic. The ability to bear children is something which is a given for most women, but for those who struggle to conceive they must go through a process. And if the process is being done on the NHS, then there are many, many hoops to jump through. And this raises ethical issues; how fair is it? The urge to bear a child is a primeval force for some women; something that simply cannot be ignored. Is it correct that women should be forced to prove their right to bear children simply because they need assisted conception?

It goes slightly beyond just ‘proving’ however; there are many guidelines which have to be met to assess whether a couple are eligible for treatment on the NHS. The following is an example of the typical conditions:

– You must be under 39
– Your BMI (Body Mass Index) must be less than 30
– You must be a non-smoker and prove this through a breathalyser.
– You must be teetotal, or close to (though there is currently no way to monitor this)
– There must be no previous children for either party
– You must have a diagnosed infertility reason, OR 3 years unexplained infertility

To take the debate at face value, IVF is a costly process and if a woman is significantly overweight, or over the age of 40, then the treatment is far more unlikely to work. Therefore you could see it as ‘wasting’ precious and expensive treatment, which may well have worked on someone who was younger and slimmer. However those against this view argue that the system takes no notice of what is normal for each woman. One patient was forced to drink high calorie shakes every day for two years to reach a weight that was seen as ‘acceptable’ by the NHS to qualify for treatment. It was simply not her body style to be that heavy and the minute the baby was born her BMI dropped straight back down 19. So should the NHS invest more in assessing each patient on an individual basis?

Another view is that perhaps the criteria for treatment should be even more stringent. One idea is that the HFEA (Human Fertility and Embryology Authority) should issue forms to be completed as part of the qualifying criteria, the idea being that they would look at the likely welfare of the child, income levels of the family, the structure of the family unit and also take note of any criminal records. But again, why should IVF patients be subjected to this when there are millions of people who would fail the eligibility assessment falling pregnant naturally every day? And how fair is it to deny a couple the chance of providing a sibling for an existing child that may well only have one biological parent in the family?

Some health authorities are looking to change the eligibility criteria by reducing the number of cycles permitted from 3, but extending the age range in compensation. Changes like this seem to do little for those hoping to conceive and they are also confusing. Already there is the situation where women won’t know what they don’t know and may well not check before they decide to try and conceive. There are also the more onerous rules such as having to reach a certain age before having IVF to eliminate genetic conditions is allowed. Another issue is the fact that the policy for access to IVF treatment is not streamlined across the UK. It differs widely from area to area, leading to a ‘postcode lottery’ effect. This necessarily raises ethical issues about how fair it is to restrict access in some parts of the country and not others. The general feeling among IVF patients in the UK is that access should be the same, no matter where you live. But sadly, this is not the case.

So therefore, it’s easy to see the benefits of having IVF treatment abroad. These clinics are simply far more attuned to the needs of the couple. Rather than restricting treatment in virtually every way possible, clinics such as Dogus IVF Centre with their Team Miracle with Dr. Firdevs are able to offer a selection of different procedures. For example, they will transfer 4 embryos, whereas the NHS can only transfer 1 in order to stay within HFEA guidelines. Team Miracle of Dr. Firdevs will also give a patient correct dose of medication for their fertility level, compared to the NHS who can only give the minimum level of medication in order to save money on their budget. There are also no restrictions placed on couples in terms of weight, age, sexual orientation or family unit. All are treated equally. However it is important to remember that these differences should not be construed as the NHS deliberately trying to prevent effective treatment; it is simply very sadly the case that the funds are not there to facilitate as much as would be required. Team Miracle, however, are not subjected to the same constraints.

Clinics such as the Dogus IVF Centre are attracting hundreds and hundreds of UK couples. The draw is not purely financial either. With ever better facilities and care programs, the general feeling is that treatment abroad is a far more appealing option. The IVF process can take place much more quickly than in the UK and for a far lesser sum of money. This, however, does not equate to a drop in standards. Overseas IVF clinicshave noticed the gap in the market and many are rushing to fill it. With the ability to have your treatment in a calm, warm environment, away from every day stresses and strains, the chances of success are arguably much higher. Rest is easy to take and relaxation almost guaranteed. Many couples are actually organising their summer holiday around their IVF cycles. In addition, there are procedures available as standard choices, such as gender selection, which are simply not routinely available in the UK. There is precious little eligibility criteria to fulfil and lots of patients report a more welcoming atmosphere.

Bearing all of this in mind, it is easy to see why patient focus is shifting away from the UK in the search for their journey to conception. Muddled guidelines, skewed ideals and far too many policies to make it an easy procedure means that NHS IVF is no longer an attractive option. And meanwhile, the clinics offering IVF abroad are seeing ever larger numbers of women arriving and the more who receive successful treatment abroad, the more people will feel comfortable with travelling for IVF. The gap between UK-based treatment and treatment overseas is rapidly closing – with the latter in the winning position. When it comes to success, it seems that this more often found in sunnier climes abroad than in the grey confines of UK clinics.

At the age of 19, and mid-way through my degree in Law, I gave birth to my first daughter. It’s fair to say that she wasn’t the most planned baby, but I never regretted it for an instant. The sheer joy and delight she brought immediately to my life made me certain that one day I would want another child. Possibly more than one. I am one of three and experience naturally leads to assumption. However, whilst I may not have been certain about the number of children, what I did know for absolutely sure was that I didn’t want another one any time soon. A delight she may have been, but my eldest daughter was also a terrific shock as a newborn. And as a one year old. And as a two year old. And – you get my drift. It wasn’t until she was four and a half that I felt remotely brave enough to consider a second child. And when I say second ‘child’, I mean that I wanted a second daughter. I desperately wanted another girl. I hadn’t been bothered the first time around, but then I had always known that she was a ‘she’. The scan hadn’t shown anything but I just had a gut instinct. I bought only pink clothes and we didn’t consider any boys names. Or, at least, I didn’t. There was no point. A late scan at 40 weeks showed that I was indeed expecting a girl. How could I have known? I couldn’t. But I did.

There was no such certainty with my second pregnancy. In any sense. From the second I had a positive test I was gripped by an irrational fear that I would miscarry. It consumed me. I spent my days taking pregnancy test after pregnancy test to compare the colour of the lines to check that they were getting darker. I monitored my pregnancy symptoms with the obsession of a lunatic. And much to my absolute distress, this pregnancy developed very differently from my first. There were days where I couldn’t do a thing but lie on the sofa, battling fatigue and nausea, but just as often there were days where I wouldn’t have known that I was pregnant. I was absolutely plagued with fear and doubt.

Each stage came as a relief. At fourteen weeks I developed a slight bump and we heard the heartbeat. At 17 weeks I felt the first flick of a tiny limb inside me. At twenty one weeks I had my anomaly scan which was clear and revealed that we were indeed expecting a little girl; to my great delight. This time round I’d had simply no idea.

By twenty eight weeks my bump was the size of most full term expectant mothers. “It’s all fluid though,” the midwife informed me, prodding my stomach carefully. “Baby seems a normal size.” That was just about the only thing that I could take reassurance from. Plenty of fluid meant a healthy pregnancy, right? At around thirty weeks I began to relax a little, but not so much that I didn’t cry on Christmas Day through sheer fear and misery. However, the wriggling movements of my unborn child were a constant reassurance. As was the fact that the day of the birth was drawing nearer. It was set for 1^st March 2007. An elective c-section.

A week before my set date I went for lunch with my mother. And as I hauled my hugely pregnant self out of the car, I was yet again beset by misgivings. Somewhere deep within, a treacherous little voice spoke and whispered “Don’t be too confident yet. Things might not be as you expect.” I literally couldn’t wait to have my baby born – the relief of being able to look at her and know she was alive was a privilege I craved.

The birth was as birth often is. Scary, intrusive and painful. The spinal block made my blood pressure drop through the floor; my hearing went and I thought I was dying. It took eight minutes to deliver my little girl, from knife to skin. When they switched on the machine that drains the amniotic fluid, I saw the surgeon jump back. She looked very young, so young that before they operated I enquired suspiciously whether she had ever done this before – and was roundly laughed at. A tiny, red-faced, wrinkled baby was plucked from somewhere near my bikini line by an arm and a leg and swiftly transferred to a table. An enormous relief swept over me. She was here. She was alive. It took forever to stitch me up and rather appallingly the spinal block began to wear off and it was painful. Towards the end the surgeon came up to my head, pulled aside her mask and said “You had a lot of fluid. Over 3 litres. Your baby is fine, luckily, they aren’t always when there’s that much fluid.” Such was my exhaustion and relief I didn’t really understand what she was saying other than that my baby was fine. The tiny bundle was placed in my arms and we were trundled off to the recovery room.

It was about an hour later when I first registered that she looked odd. She looked odd and I didn’t feel, well, as I should. There was no europhia, as there had been after Molly’s birth, I felt flat. And sad. We were deluged by visitors and my baby just looked around. Quietly. I tried to breastfeed her but she was having none of it. Eventually we were taken upstairs to the antenatal ward. The next thing I remember was my baby being taken off to have her nasal tubes suctioned out. I was shocked; my elder daughter had never had such physical interference in five years of life. My new daughter was less than five hours old!

We slept that night, but she didn’t feed. When the nursing staff and I tried to insist on a feed she vomited moments later.

The following day, it was the same. I was sad and flat. I remember cuddling her and her sleeping on her father. Around twenty-four hours after she was born the doctors arrived to give her the newborn medical. It was then that things started to change, to skew, out of all recognisable, post-baby format. Feeling around in her tiny mouth, the doctor found a cleft palate. There was no fuss, no panic, just a calm explanation of what would happen now and who would come to see us. To my utter shame, I discovered that I had no clear idea of exactly what a cleft palate was. For safety’s sake, I was told, she would be taken down to the neonatal unit to be properly assessed by neonatologist Dr Brennan. They were very sorry, but Dr Brennan was far too busy to come up to the ward to see our baby there. They wheeled her away in her tiny cot.

Half an hour passed. Then another half an hour. I wasn’t overly concerned, I was just post-section, I could barely move. I remember reading a magazine and drinking tea. The sun shone and it was very peaceful. Then suddenly, the ward door opened and a tall man came striding in. Instantly, I knew. I knew who he was and I knew why he was there. I stared in horror as he approached us and thrust out his hand – “Hi, I’m Dr Brennan.” The man who was too busy to come upstairs to our ward to see our baby, had arrived. Upstairs. On our ward. To see us. That was the moment where I learned that the meaning of the phrase “to vomit in shock”. I literally felt like I was going to throw up through shock and my whole body went weak and my head dizzy. This man sat beside us and said that as our baby did not have just one problem, they had found three, he felt that these were due to some overarching condition, rather than occurring in isolation. If I’m honest, it was no surprise. I had ‘known’ from the very moment that I was pregnant, that there was something wrong with my baby. How could I have known? I couldn’t. But I did. All tests and scans were normal. But that mysterious instinct that links mind and child had told me that something wasn’t right. And it wasn’t. But it took a while for anyone to believe me. Shortly after we saw Dr Brennan, we were told by multiple medical staff that they were sure that these abnormalities (cleft palate, receded chin, hoarse cry) had simply occurred in isolation. But I knew. Eventually a consultant geneticist arrived on the neonatal ward to assess my daughter. He examined her and said that he didn’t think there was anything genetically wrong with her, but there was one condition that he was going to test to exclude. It was called 22q11 deletion, or DiGeorge Syndrome as it is usually better known. He told us not to worry, or Google, as he would give her a less than 5% chance of having it.

A week later we learned that she does have it. Our daughter does have the deletion. She is missing a tiny bit of her DNA sequence and it can never be put right. This was why I had worried, this was why I had cried, this was why I felt strange after the birth, this was why I had an abnormal amount of amniotic fluid; it often happens with genetically abnormal babies. It hadn’t been a positive sign in my pregnancy as I had assumed. It was a warning. Instantly, I envied the mothers of tiny, premature babies that had been on the ward – they were normal, just small. My daughter could never be made ‘normal’. She could never be whole. I spent days imagining her little face morphing into the correct version if the missing DNA was inserted. I felt angry, indignant and very hard done by. A friend of mine had six healthy children. Six! Why was it my child that had to be affected?

I feared for her future, I feared for my love for her, I feared that she would never know who I was, that she would never call me Mummy. I looked back and realised exactly how much I had taken for granted with my elder daughter. Things that the younger one would just never have. Even now, I carry a very deep grief buried inside me that there is something wrong with my child. It doesn’t affect me every day, nor can I access it easily. But it is there, a well of grief that is revealed by the most innocuous things and always without warning. But the mind is an amazing thing. Very, very quickly I stopped wishing that the missing DNA would simply turn up. Very quickly I learned that actually, I would not change her for the world. And very quickly I learned that there are a huge number of syndromes where the problems are enormous and life-limiting. In our case, 22q was neither of those. We were lucky. We truly were one of the lucky ones. And just like that I went from being bewildered and angry to feeling extremely grateful, and actually marvelling at the fact that any child is born completely healthy. Looking around me now, I literally cannot believe that there are so many genetically normal children born. Knowing what I know, it seems nothing less than a miracle to me. And I had no idea until Alice was born.

Today, she is a happy, healthy, bright, beautiful, talkative seven and a half year old and you wouldn’t know anything was wrong with her. Unless you know the things to look for. She has a slightly receded chin, she has a very small mouth, she has the classic 22q nose, she has long, tapered fingers and almost prehensile toes. But you wouldn’t see any of that unless you knew. I wouldn’t change her for the world. I adore her from the bottom of my heart. If someone happened along now and offered me the missing DNA, I would refuse in a heartbeat. Alice is perfect; unique and quirky and very, very strong-willed! I didn’t know if I would ever be able to love her because she was ‘wrong’. But it wasn’t her that turned out to be wrong. It was me.

PS. Only one thing made me cry when we brought her home. It was a Babygro that her father and I had selected many months before that had a circle on the front, one half green and the other blue. The slogan read “50% Mummy/50% Daddy”. But of course, Alice wasn’t. Still isn’t. However – I like to think that I know which one of us donated the majority share of DNA in my precious girl 😉