REVELATIONS AND REVELRY

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 😉

I’m in my early thirties. I’ve been married (albeit now divorced) and I’ve had a couple of long term relationships. Although I wouldn’t exactly claim to be an expert, I was, until last weekend, confident that I could handle myself on a first date. Put simply – I was wrong.

We didn’t even have particularly firm plans. He lives far away, he was staying down near me, and we vaguely agreed that we would meet for a drink and assuming all went well he would join me for dinner with friends. So far, so easy. I suppose the first thing that went wrong was his name. He has an unfortunate name. It’s Floyde. Floyde Donald. And if that wasn’t bad enough, his full name is Floyde Donald Mudge (my spellcheck is flagging up ‘Floyde’ and ‘Mudge’ as wrong – I know, spellcheck my sweet, I know). The first time he told me I wanted to laugh out loud incredulously and say “You do realise that you’ll NEVER have a wife?” Happily I forbore and instead settled for re-naming him Hugo in my head. But I didn’t stop there. On the spur of the moment when I texted my friend about dinner I said “And he’s called Hugo.” It made paroxysms of giggles rise up inside me. I was fair though, I did tell him what I’d done and he didn’t seem to register the insult, simply remarking “That’s OK, but it does mean I get to choose a name when you come to visit me.”

When? *First inklings of something disturbing.*

I planned my day rather carefully and the last thing I had to do before I went home, showered, changed and made myself beautiful was catch the horse and put her away for the night. That’s all. A simple stroll to the field, slip on a headcollar and put her safely in her stable, which incidentally was one that I’d prepared earlier. Off I went, in through the gate I went – and off down the field at a rapid rate the horse went. She had absolutely no desire to be caught. I am not joking when I say that I was so desperate to bring her in that after trying the usual sidling-up-to-her-pretending-I –had-food-trick, I literally tried to chase after her and catch her. Unfortunately for me she was more evasive than Oscar Pistorious on the murder stand and though I tried everything, there was no way that horse was going to be caught. My watch told me that I only had one option – dash home, get changed, meet him, then try and catch the horse again. There was no other way around it. Hence me turning up to this essentially blind date in a nice pair of shorts, nice top, fully made up and perfumed – in a pair of muddy Dubarry boots, headcollar in hand and my opening gambit being “Hi, lovely to meet you, er – we just have to go and catch the horse.” He looked very much like he thought he was humouring me but he followed me and off we went round the field. Yes seriously. I one way, he the other, between us we tried everything bar lassoing the wretched creature, but to no avail. She was simply not going to play ball. Eventually I made an executive decision to leave her out. Why I hadn’t done this several hours before I have no idea. By this time I was hot, sweaty and my make-up had run. “Sod it,” I said. “Wine?”

He drove and we arrived at a rather nice riverside pub (I’d remembered to change my boots for heels) and I hastily took the opportunity to escape to the ladies to repair my make-up. However, when I got there I remembered that I’d left my make-up in my car. At the stables. I tried my best to scrub sparkly eye shadow from my nose and mascara from my cheeks but wet paper towels weren’t really cutting it. So I put my sunglasses back on and marched outside. I could remove them when I was drunk, I reasoned. On the table, rather pleasingly, was a bottle of wine. With one glass. “Where’s yours?” I asked. “I don’t drink.”

“YOU DON’T DRINK?” (said my brain).“Oh. Right.” (said my mouth). *second inkling of something disturbing*.

There was then an hour where I learned the following about Floyde: he works in a top secret job – that he can’t discuss. He went to a school from which he was expelled – he can’t discuss. He’s had an interesting work life – that he can’t discuss. He lives in a nice town, which I know, but the exact part where his house is – he can’t discuss. He doesn’t seem to have any interests or hobbies (bar cycling, which I loathe) and finally, he’s only had one long-term relationship, that, guess what? Yep, he can’t discuss…..

We turned up at my friends’ house (to my huge relief) and in we went. I was handed a glass of Prosecco and Floyde accepted a glass of water. Pleasantries were exchanged and then our hostess said “So, Hugo, what do you – ” and by mistake as I snorted with laughter, I inhaled my wine. As anyone who’s ever done it will know, bubbles make your eyes water. I sort of choked and spluttered as wine came out of my nose and, I think, my eyes. Floyde just looked at me mildly, like a cow, while my friends looked concerned and confused, as well they might. I know I explained about the name thing but I honestly can’t remember which name they used for the rest of the evening. In fact, I can’t actually remember much about the evening, except our hostess saying several times “Oh Sarah, you do make me giggle.” Which is all well and good – but I didn’t mean to.

Eventually, the time came for us to leave. And of course, the ubiquitous question raised its head, was I going to go back to his hotel for a coffee (or a vat of wine), or was I going to go straight home? For reasons that I won’t bother to go into I’d seen fit to bring my dog along with me so I suggested that we drop him at my house and then go for coffee. Floyde duly trundled about the countryside, doing my bidding and after a while we arrived at his hotel. Happily by now I was too drunk to remember anything at all, except after a time demanding that I be taken home again (by now it’s about 1am). So off we trundled back through those country lanes to my house – except once we got there I realised I’d left my handbag – and keys – at the hotel. Even this didn’t faze Floyde, he just drove back. I located my handbag and somehow fell asleep. When I woke up (fully clothed) it was 4am and Floyde was snoring. I poked him and said “I want to go home.”

“Righty-ho,” he said. “We’d better take you.” Righty-ho? *third inkling of something disturbing*

By now, any semblances of manners that I’d once had were long gone. I climbed back into his Range Rover and allowed him to abandon his bed at 4am to drive me back to my house for a third time. *fourth inkling of something disturbing*.

The following day he was decent enough to come to my house for a fourth time and give me a lift to my car. He was comparatively chatty this time and through my hangover I heard him mention his desire for marriage, his desire to get married soon, his desire for children, his desire for marriage, his desire for a big family home, his desire for marriage (had he mentioned that?) and finally, the fact that his family have a pew in Winchester Cathedral which entitles him to guess what? Yup, get married there. *fifth inkling of something disturbing*.

Reader, I married him.

Did I bollocks. I ran, screaming. Very fast. I may be several things, but a Mudge will never be one of them.