Anencephaly support

[Barry Horne's Love Child]

Its taken me years to put this down in words, hope it came help anyone who’s ever been by anencephaly.
Part 1

It’s taken me a long time to do this, but after years of suffering from the torment and mental anguish of losing three children to anencephaly I’ve decided to jot down my experiences, and hopefully help others who are faced with the same impossible choices that both my wife and I have faced over the past ten years.



This is what I’ve wrote tonight as the first paragraph of what is my own, and Claire’s long story and experiences of the condition.



Our pregnancy had gone as smoothly and as happily as any newly married couple could ever hope for. We’d been married for about a year, living together for three and felt like we where on the natural progression of what any married couples life should work towards.



I can’t recall exactly how long we’d been actively trying to conceive, but can vividly remember the day Claire ran halfway down the stairs after taking her pregnancy test, before excitingly shouting out that we where pregnant.



A few weeks later we were at the Liverpool women’s hospital, sitting within the busy waiting room surrounded by other excited and expectant parents.

We could overhear the sounds of sonograms in our background, listening to the beautiful, rapid, rhythmic beat of another patents unborn child, saw other patents with their pre school children, playing with the toys in front of them, and it all seemed that Claire and I were in the first steps on our natural journey.



This waiting room felt like a exciting and joyful place, full of promise and hope....... I could at that point never have imagined that this single place would, within a short 24 hours become my very own version of a hell on earth.



We entered the room for our 12 week scan, and excitedly looked upon the screen before us as our child appeared for the first time, our sonographer had introduced herself but the friendly and excited mood suddenly changed. Claire and I were still caught up in the sheer bliss of seeing our child for the first time, looking at the digital image that we were unable to see carried such devastating news.



“I’m really sorry, but our consultant won’t be able to see you today, can you return tomorrow first thing for a repeat scan?”



Due to my job, I understood the difference between what she was saying and what this really meant, I knew that something was wrong and that in all likelihood she knew at that moment exactly what, but was not in a position to be able to tell us. I understood, it’s horrible, I’ve been there myself in my own working life.



On a normal working day, a consultant may have been able to see us, but as is always the case within healthcare if someone can’t see you it’s because their with someone who has a greater need, so we understood, went home and lived throughout the longest, torturous, and ultimately blind 24

hours of our lives.



We didn’t at this point ever even think that the news we could face would ever become something so unmanageable, maybe a reversible or operatable condition, my father had an atrial septal defect? Spinbifida? Downs syndrome? Anything that would flag up as an at risk pregnancy but something that, ultimately we could face together, accept, and move on forward?



We were faced with the unknown and hadn’t ever considered the possibility that something may be wrong when we’d entered the hospital that morning.



Claire has always coped with trauma a lot better than I have ever been able to, she’s so much stronger and is the most incredible person I’ve ever met. Claire has lived through some of the most difficult things that no child should ever have to face, from what she’s told me about what she’s faced throughout her childhood and teenage life even, it’s always amazed me that she’s turned out to be the person she is today, even before this new torment began for us.



She again managed to put our news to one side and have an early night in preparation for the next day. I had a few beers, and before i knew it we were back at the women’s hospital again.



The difference could not have been any more extreme from what we’d experienced only a mere 24 hours earlier, from sitting within a room full of hope, to what had rapidly became a progressively developing living nightmare.



Suddenly the sound of a child’s heartbeat behind us became a rhythmic, pulsating reminder that there was something wrong with our own child, each second felt like an increasing torture, a night of not sleeping and stress didn’t help, and what was in reality only about an hours wait had suddenly become what felt like a lifetime within this prison of a room.



The pale white poster filled walls, the half opened windows held in place by a chain trapping them within their constant, forever position, I’ll never forget, my memories will never allow me not to be forever haunted by this one still single room.



We had waited for about an hour, which I know isn’t a long period especially in a NHS provider hospital, and as a NHS worker who is immensely proud of what our service provides us all under increasingly difficult circumstances, we fully understood.



But this wait felt like a purgatory, a never ending limbo in which I was repeatedly tormented within my own thoughts. I don’t think Claire and I even spoke during our wait? or even on the journey to the hospital? Or from when we woke?



We met our consultant, Dr ******* who from the start I’d like to say was fantastic with us both, and hugely supportive of the difficult choices that we were soon to be suddenly faced with.



We had a quick scan, which I believe we all knew was a formality to confirm exactly what was the reason for why we where here again, and then were led towards a private consultation room.



We were left alone a few minutes.



Dr ******* and our nurse who’s name i can’t recall were amazing, supportive towards us both, but before either of them had spoken I saw a word written bold in a marker pen, unmistakable letters on the front of our case notes, a word that has since tortured and dominated my life ever since, ANENCEPHALY.



As a then surgical nurse myself, i felt almost embarrassed not knowing just what the word anencephaly meant, but as Dr ******* then went on to explain I could see exactly why I hadn’t heard of this devastating condition before:

- 1:10,000

- Extremely rare

- Unsustainable with life

-Skull and brain not forming fully

- Child not able to live if surviving to full term



We were then given our options, return the next day for a surgical termination of our pregnancy as advised, continue up to the point of which our child’s pregnancy would naturally end, or continue to full term in which he or she would be unlikely to live for anymore than the first few hours of life.



These “choices” had suddenly became the impossible options with which we where horrifically faced with, and within a short 48 hour period of arriving at this very same hospital as a exited and expecting newly wed couple, we would be leaving, mourning our child that we had only ever briefly met through two quick digital views on a ultrasound screen, and who we would later find out would have been our daughter.

 

[Barry Horne's Love Child]

Part 2



We left the hospital for a second day, in which we felt suffocated within a cloud of absolute confusion, a nervousness and uncertainty of just what these next few days would bring for us.



Unlike the day before we at least now had some idea of what we were facing, and as we walked towards Liverpool city centre, I could hear the word anencephaly repeating itself over and over again, in a pulse like motion within my head.



We had so many questions, was there a reason why this had happened to us? What the condition actually was? How to even correctly pronounce the word? Would this happen to us both again in the future?

Ultimately we both knew that whatever impossible choice we made, the end outcome would be the same, this was ultimately out of our hands or control, and our child would not survive.



Fate, up against our will.



When we were given the options on how to move forward by Dr *******, we both decided that having a surgical termination of our pregnancy would be the correct way forward for us, and to be honest the prospect of us hoping to carry to full term, or to the point in which a miscarriage occurred, was never something that we had ever considered to be an option for us.



We were given the choice to either return the next morning, or with the next day being a Friday, wait until the following Monday to allow us the weekend to fully process the devastating news that we had been given.



For us, or minds were set, we felt certain that, as difficult a choice as this was, we were making the correct decision for us but most importantly for our child, we reluctantly opted to come back the following day to end our pregnancy.



That evening I had to break the news to the rest of our family.

Claire was in our bedroom, distracting herself by watching a dvd box set.



When we had returned home that afternoon we’d tried to find some information about the condition, quickly realising that google wasn’t the most reliable, accurate or sympathetic source of reference.



We’d seen images of children who had survived to full term, and just how much the skull, brain and facial features of these poor children had been affected by this devastating condition, the future of our own first child. Images of children who had only lived for a fraction of their otherwise expected lives, that had been stolen away by this defect of which we’d been completely unaware of only a few days before.



There was an overwhelmingly pro-life stance on the limited support groups that i had found online, most of which were American based, the reality of what we were facing was beginning to hit home, and our house had again fell silent.



I didn’t want to leave Claire alone and can remember having a uneasy feeling about leaving her. I was worried that this would all become to much. I had horrific visions of Claire taking a medical overdose, or hurting herself if I left her alone.



Claire had an extremely difficult childhood, and had already faced issues that no child should ever have to live through. When we first met the effects of the traumas she’d faced were clear to see, and after a period in which she’d opened up and told me about what she’d faced, I was worried that the prospect of losing our child would become to much for her to face.



My parents lived about a twenty minute walk away, both my brother and sister still lived with them. They all knew that there had been a problem with our first scan, and that we would be returning today to find out the full extent of what we were facing. I called to say I was heading up, and as much as I didn’t want to leave Claire alone felt that the conversation I was about to have needed to be a face to face, and felt that such devastating news shouldn’t be given to others over a phone call.



We were all sat in the kitchen, and I went on to explain what we had been told, what our options were, tried to explain what anencephaly was within the very limited knowledge of a condition that I’d only heard of for the first time myself that morning.



Everyone was devastated and understandably didn’t quite know what to say or do. Paul and Louise, my brother and sister said they would meet up with me while Claire was in theatre, and without it being said I knew they were doing this just to keep me distracted and stop my mind from racing. My dad had offered to drive me home but I wanted to be alone, and I walked back home after what had only been a quick 10-15 minutes.



When I returned I checked Claire was ok and soon after found myself sitting alone in our back garden, it was pitch black outside, I couldn’t really say how long I was sitting outside for, just starring into the nothingness ahead, no music, no distractions, just a blank, empty nothingness.



It must have been a few hours and I suddenly realised just how cold I was, I went back in and headed off to bed to try and get some sleep, dreading what would be facing us both in the morning.



For the third day running we were making the now overly familiar way back towards the Liverpool women’s hospital, this time feeling the polar opposite to how we had on the Wednesday.



We were sat in a small waiting room with three other couples, all of us having the same look of anxiousness, the room was silent.

I can only presume that they were all here for a similar reason to us.



We were then taken to our ward bed, one of the other couples were placed into the same room as us, although there was a degree of privacy as the room was large enough for at least twice as many beds than what were in there.



Claire was given a gown to change into and we then met our anesthetist who went on to explain how the day would proceed, telling us that due to our circumstances Claire would be first into theatre, and going on to apologise and expressed his sorrow for what we were both going through.



Shortly after, Claire was taken into theatre, and I told her that I’d be here for her as soon as she returned. A few hours later and I was back on the ward, the effects of Claire’s sedation were beginning to wear off and she was becoming more aware of her surroundings.



She was crying, only very quietly but it was obvious how much pain she was in. She looked so lost and vulnerable lying there on her bed.



I felt completely numb and just so overwhelmingly helpless, feeling that something had been both physically and mentally stolen away from us both.



I can honestly say that I have never fully been the same person since that day in September 2010, I can’t explain what it is that just isn’t there within me anymore, and almost a decade later it still hasn’t or is ever likely to return.



I helped Claire to climb out of her bed and walk her to the toilet, she seemed so weak and frail, I wanted to just pick her up and carry her, too protect her. She was still bleeding and crying when she saw blood within the toilet basin. I helped her back towards her bed and she managed to fall asleep again.



That afternoon we were allowed to return home, the other couple in our room had not long returned from theatre and it was obvious that they were in the same place we had been ourselves just a few short hours earlier. The hospital staff informed us that we would be sent out a follow up consultation with Dr *******, and before we knew it we were back at home.



It had been just over 48 hours since we had excitedly left to see our child for the first time, and after a whirlwind of emotions were back at home again, only now it was just the two of us, our child had been taken away from us. I felt both physically and mentally crushed.

 

[Barry Horne's Love Child]

Part 3



The next week or so remains a complete blur, whether through denial or in some way as a degree of a self-preservation, our collective memories of this time are patchy at best.



We had both been off work for a week and after seeing our GP were signed off for another.



We had thought about maybe going away on a holiday, just to try and escape it all, the house, being around people, just general life, and to try to put what we had been through for the past week behind us.



Eventually we agreed that we were not quite ready to take that step forward, that in some way it would not feel right for us to be trying to enjoy ourselves, relaxing, forgetting, it just all felt to raw.

We ended up spending most of the next two weeks at home, trying to keep ourselves busy and distracted. We decorated the entire house, anything to stop us thinking about what we had been through, anything to keep busy.



It was on the Saturday, the day after our surgical termination that I completely broke down for the first time.



I was watching football in the living room, and I don’t think Claire had even left our bedroom since we had returned from hospital the day before. Everton were playing Manchester United and I was watching the match in a form of semi consciousness, going through the motions of what I would have otherwise been doing on a normal weekend. Everton were losing the game 3:1 and I couldn’t have cared any less, of course it didn’t matter but for a short two-hour period I had found a distraction, something to in some way occupy my mind and thoughts.



With a few minutes of the match left the score was suddenly 3:2 and then moments later 3:3, I jumped up but instead of the usual instinctive cheer I burst out crying, just that sudden bust of normality became overwhelmed within the tsunami of stress we’d faced. Alone in our living room, the floodgates had opened and I couldn’t stop as the speed and realisation of what Claire and I had been through over the past four days unfolded before me and hit me like a train.



We had our follow up consultation with Dr *******, and one of the first questions we were asked was if we would like to find out the sex of our child, this was a huge relief for us both as we had up until this point been unsure if we would have ever be able to, it was so important for us to learn if we would have had a boy or a girl.



We were told that we would have had a baby girl. We have never been able to give her a name, but for us, she is our first child, our first daughter.



We then went on to discuss a bit more about what the condition was, a neural tube defect in which the development of the brain, spine or spinal cord is interrupted, with the most common NTD’s being Spina bifida, hydrocephalus or Anencephaly. We were given advice on how to best approach any future pregnancies, what the chances of this ever happening to us again were, and advised that although it’s not impossible, it remained highly unlikely for us to ever suffer another NTD pregnancy again.



Years later, in 2014 I became involved with the running of a support group for anyone effected by the diagnosis of anencephaly. One of the biggest pieces of advice I try to give all of our group members is to try and resist what is only a very natural and strong urge to try and conceive again as soon as possible, as although it is highly unlikely to happen again, and as difficult as it is to discuss, there is always that very small chance that it may, and it is vitally important that a couple are as mentally prepared as can be incase this unlikely possibility unfolds before them.



I give this advice as this is the reality of what Claire and I were faced with just a few months after our first loss, at some point during early 2011.



Of the three children we went on to lose, it was this, our second loss that for me was the hardest to come to terms with and to recover from, due to the lack of control we had, the sheer feeling that we were in some way cursed, and that having a child of our own my just simply never happen.

The impact this had on our relationship, my increasingly selfish and self-destructive coping mechanisms following our loss, but most of all the was the way in which we actually lost our child.



We had followed the advice given to us, Claire had been taking the advised higher strength 5mg of folic acid for three months before we tried to conceive again, and then continued for the following three months after we had found she was pregnant. We’d both been trying to stay as fit and healthy as possible, regularly going to the gym and generally trying to maintain as positive an outlook as we could, we felt that we had prepared as well as we possibly could, and that the chances of us having another child effected where slim, that surely we’d had more that our fair share of bad luck.



We both had a degree of apprehension as we built up towards our twelve week scan, we had now found that anencephaly couldn’t be diagnosed before a twelfth week date, so any earlier scans would not have been able to let our minds rest any easier.

Our scan was due to be at the Women’s hospital, where we had been only a few months earlier for our follow up consultation with Dr *******. But overall, we felt positive and had even allowed ourselves to become excited again for the future, and have the chance to move forward from the loss of our daughter.



Shortly before our 12-week scan date, Claire began to feel some abdominal pains and found that she was bleeding. We tried to remain calm, called the Women’s hospital and were advised to attend the fetal medical unit.



A large part of the next few hours are a bit of a blur, and both Claire and I are unable to fully remember the finer details of the conversation or events that followed.



Claire was taken into a room by herself were she has an internal ultrasound examination, I was them allowed to enter then room and we were told that our child had not developed to the size expected of a near twelve week old foetus, at some point he or she had stopped growing, that the foetus had not fully formed, his or her development had stopped at some point during our pregnancy, and suddenly we were back in the position we found ourselves a few months earlier, in an autopilot state, not able to or allowing ourselves to truly absorb the reality or magnitude of what those words being spoken between each of us in that room really meant, we were again arranging to return for the surgical termination of our second child’s pregnancy.



Once at home Claire was distraught, there was nothing I could possibly do or say to make this any better and we were again facing the same nightmare from which we still hadn’t even began to wake up or recover from.



From upstairs I heard Claire shouting my name. She was in the bathroom, sitting on the toilet, crying uncontrollably with the pain she was feeling in her abdomen. Terrified to look she told me that she felt like she has passed something, I could see there was blood on her legs and within the bowl. I told her to leave, I didn’t want to see for myself but there was no way in this world I would have ever let her look for herself.



The bowl was full of blood, there was a dark tissue within, I panicked, didn’t know what to do, and only after flushing the toilet did it hit me what I had just happened, what I had just done.

Our child was way beyond helping or saving but this was not a dignified way to go. I felt sick, I knew that this moment would be something that wound forever haunt me and stalk my thoughts for the rest of my life, it just felt so wrong.



I told Claire what I thought id seen. We returned to the fetal medical unit and following another ultrasound the blank image on the screen confirmed what we already knew, we where no longer expecting, for the second time in six months we had lost a child in such devastating circumstances. Only this time we’d never be able to find out if we had lost a baby boy or girl.



To this day, no knowing the gender of our second child absolutely kills me, We’ll never know, there will never be a way we can ever find out, the circumstances were again completely out of our hand but it just feels so devistatingly cruel to have this small part of closure stolen away from us.



The odds are that we would have had another girl, we know now for a fact that with our five pregnancies, four of our children were girls, so the odds are that our second child would of also been

 

[Barry Horne's Love Child]

Part 4



The past three entries I have wrote have been extremely difficult to try and put into words, to play back over and live throughout once again within my mind, some parts had laid dormant for the best part of over a decade, some almost being forgotten until I began to lay down these words and relive the timeline of our story.



For this entry, I’ve decided to jump forward to six months from where part 3 had left, as although those six months would go on to possibly be the most difficult period of my life, and something I will come back to discuss later, I feel that it is important to recall the positives that Claire and I have gained throughout our difficult journey.



I’m aware that my last three entries will have also been really hard to read for a lot of people, stirring up memories and emotions that may have been lived through themselves.



That is why this entry ends with a huge positive, I don’t want the reason for me sharing our story to be lost within a wave of negativity, or to lose site that the reason why I’m sharing is to try and help others who have been, or are currently in the place we have found ourselves so many times before. I wanted this part of my story to end with what is the first of the two happiest moments of my life, and with Claire and I becoming parents to my now eight year old daughter, Hannah Michelle S********.



About six months had passed since we’d lost our second child in such traumatic circumstances, and we had reached the point in which we were trying to move forward with our lives as best as we possibly could. I’d had my 30th birthday, just inviting a few close friends and family around to the house, and our 2nd wedding anniversary was fast approaching.

After a great deal of discussion and trying to decide whether we were ready to attempt to try for a child once again, Claire again began her three months preparation and taking the higher doses of her daily folic acid.



Our approach and mindset was to see how we felt in three months time, too try and not put any extra pressure or timescale upon ourselves, and maintain a frame of mind that if we were in a place to try again, the preparation would be done and we’d then be in the safest position possible for us to try again.



Soon afterwards we were doing what had now becoming the reoccurring process of visiting our GP and making arrangements for scan dates.



The difference this time was that we knew, and were painfully aware of the risks we now faced, we’d had our first pregnancy blissfully unaware of the devastating possibility of neural tube defects. As a young and relatively fit and well couple, the thought of such complications had never truly entered our thinking as ever being a stress.



The second time around, we had painfully found that these risks are indeed a cruel reality, but with being so rare had truly believed that the odds were so low, 1:10,000, of us suffering a reoccurrence, and with a degree of us having already had our bad luck, we would ultimately be safe.



This time though the threat of another loss felt more likely than the chances were of everything ever eventually coming together for us.



We’d waited a few weeks for our scan date to come through, there had been a mix up, our appointment hadn’t been processed and after contacting our GP we were given a date to attend the Aintree hospital site.



This came as welcome news though, as being in a different hospital afforded us an escape from the torturous walls that had haunted my every waking thoughts for the past year, the visual prison that had become synonymous within my memories of a personal torture, and the physical representation of our devistating news, it meant we’d at least be spared a reminder of the anxious waits we’d previously faced, and as amazing as the hospital staff had been with us, this felt like at least some form of a fresh start.



I’ve always found the waiting and not knowing what was too come the most difficult part of all that we have ever been through.



I’m not the kind of person who can switch off or distract myself easily, and to an often unhealthy degree find myself obsessing over thoughts once they are forever trapped within my head.

I’ve often described the waiting as a feeling of being trapped in a purgatory like state.



I’m not religious and I don’t believe in a heaven or hell, my own personal belief is that people can go through their own versions of these concepts within their own waking, living lives on a daily basis.

In my eyes, a heaven or hell does not await us, it’s something we live through, and either enjoy or survive though these moments within our conscious living lives.



For me, the waiting between our scan dates, the waiting to find out if we’d have to live through the agony of grieving another child we’d never meet all over again, not sleeping, knowing his or her gender, my negative spiral of thinking, having to live through each day, day in day out, the absolute grind of basic everyday living, the increasing and crippling pressure that my own self destructive thoughts were placing upon me, the waiting........this is what my own version of a private hell feels like.



I believe that I have nothing to fear once my life has ended, as nothing could ever be worse. I’ve lived with this purgatory, I’ve lived with the concept my own hell. Once a man has lost a child, he is in some way invincible as there is now no new way to hurt him.



The day finally arrived, we made our way towards Aintree and found ourselves within our new surrounding.

Taking a deep breath as Claire’s name was called, we nervously went through to be handed our child’s fate, the waiting was finally over, there was nothing else we could do other than find out if our child would be likely to survive or not.



Fate, up against your will.



We were handed two hugely significant results, given our history and quite obvious anxiety, the first and overwhelmingly most important was that our child’s skull had been visible and appeared to be fully formed.



For the first point in any of our pregnancies we’d managed to get over this first hurdle, the stress that I’d felt building up so much over the past weeks cleared and we could for the first time in our journey begin to look forward.



Although we knew anencephaly could not be fully ruled out until after the 20 week period, this felt like a huge step forward for us both.



The second thing we were told, and in reality we barely even processed at the time, was that Claire had developed a significantly large ovarian cyst which would need to be monitored.



We left the hospital with the feelings of excitement that had been cruelly stollen away from us just a year earlier, with a return date to review Claire’s cyst.



A second scan showed that her cyst had grown even more, we joked along with our sonographer that as we’d been happily telling our friends and family we were expecting again, people had been commenting on just how big Claire was, and if we were sure it wasn’t twins.



We were referred to the women’s hospital, had further scans a week or so later that showed it had continued to grown and could potentially reach a point in which our pregnancy may now become at risk, that surgery would be needed, ideally after our child had reached the 20 week point.



What had initially seemed to us an insignificant and irrelevant finding, dwarfed by the overwhelming relief we’d both felt that day, suddenly had the potential to destroy our lives all over again.



After the fear and stress of anencephaly had passed, we now had this new torment to endure. From loosing our firsts two children to such a rare birth defect, too then possibly go on to lose our first healthy child due to the development of something as common as an ovarian cyst would have been a step to far for me to take, I honestly don’t think I would have been able to move on from it all if we had somehow lost Hannah over this period. It would have been a case of life just pushing me over that limit I could take.



There was also the possibility of Claire completely losing her affected ovary, as the cyst had been so large, our surgeon was unsure as to which side, or if both sides had been affected, and in a sense was having too perform blind, unsure what the outcome or damage would be. Our pregnancy, and Claire’s fertility were sudden at a significant and terrifying risk.



We had our twenty week scan at Aintree just a few days before Claire was due in for surgery at the women’s hospital, we where asked if we wished to find out the sex of our child and couldn’t have said yes fast enough, we where ecstatic to find out that we would again be expecting a baby girl.



This again felt like some form of closure for us. We’d learned that anencephaly is more prevalent in girls, and knew 100% that our first loss would have been a girl. We’d already picked our name, Hannah, and chose to give her the middle name of Michelle, after Claire’s older sister who sadly passed away when she was a teenager.



This scan was the final step for us, and the relief of being able to fully rule out anencephaly was unmeasurable, we now just faced this last obstacle in our way.



Claire’s surgery went well, at no point was either of us ever really worried that she wouldn’t be ok such is our belief and confidence of the amazing work and expertise of all the staff within our NHS services provide.



We were confident everything would work out well for the three of us, but my levels of stress in the build up were unbearable. I was living the same sleepless life I had done in the build up to our 12 week scan. I was back in the same routine of a living hell, the same limbo I’d lived within before, my mind not being able to ever switch off with the downward spiral of negative thoughts gaining pace with each passing day.



Claire, as always, was unbelievably strong throughout it all, took it in her stride and dealt with it as a matter of fact and a process that we just had to endure and overcome. She was right, this was again completely out of our hands or control, something that we just simply had to work our way through.



Paul and Louise came to meet me again, the same way they had done a year earlier, and as a creature of habit we ended up going to the same pub and eating the same lunch while Claire was in theatre.



When I got back to the hospital, I was again sitting with Claire as the effects of her anesthetic medications were wearing off and leaving her system.



It was different this time, she wasn’t upset, seemed a lot more alert and focused, we didn’t speak much as the surgery seemed secondary to the news we were both waiting to hear.



It was a huge relief to find out that Hannah was safe, and again, much in the way as it had on our first scan date, the sense of relief was overwhelming. Our surgeon then explained that the cyst had grown to 30cmx20cmx18cm and had resulted in Claire having to have a salpingo oophorectomy, the removal of one of her ovaries and Fallopian tube, luckily it was just the one side that had been affected, Claire’s fertility had been saved. As big a news and relief as this was, it was all secondary to us, Hannah was safe and that was all that we cared about.



During the weeks at home recovering

Claire felt Hannah kick for the first time.



On 11th July 2012, Hannah Michelle S******** was born at 11:58am, weighing a healthy 8lb 1oz, we’d finally become parents, we could not have been any happier, we had a degree of closure. No matter what would face us in the future, we were now parents to our beautiful little girl, nothing could take that away from us and we felt that we could begin to put the nightmares we had faced for the past few years behind us.

 

[Barry Horne's Love Child]

Part 5



There was a long and tormenting period of our lives in which Claire and I felt that we were never going to be able to have a child of our own.



The circumstances in which our first two children were lost had tore any of the hope or belief that any newly married couple would naturally have, and when Hannah’s pregnancy was put under substantial risk, our first healthy pregnancy was again lived under the cloud of uncertainty and a fear we had faced throughout the entirety of our journey.



What I really want to highlight, is that even though we’ve both had to endure our own amount of stress and heartbreak, we still feel extremely lucky for where we find ourselves today.



I appreciate that for others, no matter how their pregnancies have either ended, or may have ever failed to conceive, the heartbreak shouldn’t be compared too what Claire and I, or anyone else has been though.

Each persons story is individual to them and no more or less traumatic than another.

I hope that what I have spoke about hasn’t at any point came across as insensitive, or in any way implied that the circumstances in which we lost our children was in some way any more or less traumatic that what others have been through.



If my story has in any way, I’d like to apologise and state that my stories have only ever been told solely from my own personal experiences, and again can’t highlight enough just how lucky we feel we are to now have our two daughters, Hannah and Amber, in our lives.





We had, for the first time in years been able to try and put our anencephaly nightmare behind us, Hannah had her first Christmas and by the time she was 9 months old we’d moved house and bought our first home.



This felt like another fresh start, putting a painful part of our past behind us, and on the day we moved out could finally leave behind the space in which we had lived through the collective nightmares that were held within those very walls.



Our landlord had offered to sell us the house we’d been renting for the past 6 years at a bargain price, but it was never an option we could ever consider, and despite the many happy memories we had accumulated such as Hannah’s first nine months of life, the day we came home as a married couple, our engagement party, there were just to many painful memories that we felt suffocated us, and just had to leave behind.



Sitting alone for hours in the dark garden, still being haunted by how our second pregnancy had ended, the countless hours we locked ourselves away, Claire’s recovery from surgery, there was just too may painful memories trapped within the walls of our home, it was now time for us to move forward.



One moment of stupidity and human impulse turned the life we’d try to leave behind us upside down all over again.

Without going into much detail, and following a drunken night out, there was the possibility that Claire may be pregnant again.



It was, October 2013, the day of my uncle Brian’s wedding, and being as organised as always I was in town buying a last minute wedding gift and looking forward to the night of celebration ahead.

We’d bought a pregnancy test and the plan was to wait until I was back at home to see if we were, as suspected pregnant again. The second I saw my phone ringing I knew in that instant why Claire was calling.



I answered and heard the following words,



“I’ve done the test, I needed to pee, I’m pregnant”.



I won’t lie, I was ecstatic and couldn’t wait to get home and give her a hug, but as I sat on the bus heading home the reality was already beginning to set in........ we hadn’t took any preparation, Claire’s not been on the folic acid, the guilt of us drunkenly making this mistake knowing the potential consequences we could face, just after getting or lives back on track, our fresh start, it felt like it could all suddenly come crashing down on us all over again.



That night Claire stayed at home with Hannah and I went to my uncle Brian and auntie Marie’s wedding. The intention was to keep our newly found news to ourselves but after five, six, seven pints I was feeling the excitement all over again.

I was sitting next to my brother Paul and his wife Britta, and soon telling them our exciting news. Next was my sister and her husband Ste. I then told my mum, and finally my dad.



I and everyone else knew the risks we faced but the plan was to keep it quiet and between ourselves, just the closest and immediate family.



The problem was pint five, six, seven soon became pint twelve, thirteen, fourteen and I was then telling anyone who was within earshot, getting hugs, congratulations, more drinks.

Deep down I knew, more than anyone else how cautious and realistic I should have been, but the mix of excitement, the feeling and belief of us having to have used up all of our bad luck, and again, the effects and poor choices following the drinking of too much alcohol had again kicked in.



Over the passing weeks I slipped back into the familiar purgatory lifestyle of stress, the endless nights of non sleeping I’d become used too. I’d again started suffering from frequent episodes of sleep paralysis whenever I could finally drop off, and now had the additional mix of feeling self loathing, knowing that if we were to have another child affected by this horrific condition that it had been completely avoidable and my own fault.



I knew if we didn’t somehow avoided the inevitable outcome, that this new nightmare would have been fully of our own making. We’d allowed ourselves to fall pregnant again without the vital preparation which had played a huge part towards Hannah’s healthy birth, we’d clawed our lives back on track only to somehow stupidity allow this insidious torment to make its way back in, to allow anencephaly to potential crash back into and destroy our lives all over again.



Scan day came around and our mood was completely different from either of the previous three pregnancies we’d had, there was an air of reality and acceptance, we’d had a long period to allow what the likely consequences of our actions would lead to, and the guilt I felt having facilitated this nightmare to re enter our lives was building more with each day that I lived through.



By the time we finally reached our 12 week scan i almost felt relieved, although we had the same fear and apprehension we’d previously felt in the build up to our previous scan dates, there was an inevitability this time around, we both knew what was coming, the odds where stacked hugely against us, we just expected the worse news, we just knew.



We were back at the women’s, the same walls in which we’d painfully been sat within before, again trapped in my own private version of a hell, those same torturous, strangling walls staring straight back at us, mocking the despair that I had created for myself all over again.



As Claire’s name was called we again took a deep breath, only this time we didn’t have that same feelings hope within us.



There was a student medic in the room, and after being asked if we minded him being present soon found ourselves involved in a discussion about what the difference between Acrania and Anencephaly were, the images on the screen before us showing a perfect example of our child, again suffering the horrific and devastating affects of Anencephaly, for the third time in as many years, we were again losing another child to anencephaly, we’d both expected it and knew before we’d even entered.



I knew it from the day I’d sobered up after my uncles wedding, and now it was confirmed as we discussed how a child suffering from Acrania’s scull doesn’t form and it’s the amniotic fluid that goes on to destroy their developing brain, whereas for a for child with anencephaly the brain would never have been able to fully form, the genetic capability is never there from the onset of development, and how the facial aspects may never fully form, that cardiogenic and spinal defects are likely to occur. In essence the two diagnosis carry the same inevitable outcome of being non life sustainable following birth.



For many people, the instinct would have been to snap, to slip into a rage when hearing their child discussed upon a screen as a teaching exercise, as an formally of what we all knew was about to come. The truth is that I was beaten, it had happened again and I just felt completely empty, crushed, a shell of the person I once was and had hit a point in which I just didn’t care anymore. I just wanted it all to be over.



With hindsight we should have insisted that a termination date was arranged that day, but as our scan was a few days before the official twelve week date, we were asked to come back on the Friday to 100% confirm what we were seeing.



I believe that the staff were trying to live out for any slim chance that what we had seen was wrong, especially given our history, but Claire and I both feel we are realistic, we both knew before the scan that our child would most likely be lost to anencephaly and no amount of preying, well wishing or positive thought was ever going to change the outcome. Again, and with the benefit of hindsight we should have insisted that this agony wasn’t dragged out for us for any longer than it had needed be.



I was in work the following day. I wasn’t in a fit state to be working, but it was different for us this time, we had Hannah who had just turned one year old, and there was now a new reason as to why we had to try and continue with life as best as we could. There was no way Hannah could understand why me if Claire were sad, crying, or just not being her mum or dad.



On one hand it was easier, we had our child this time around, something that wasn’t the case following the uncertainty our our first two losses. The hard part was we were unable to grieve the way we had before, we simply had to get up, couldn’t lock ourselves away, had to look after our child who we were again realising just how lucky we were to have in our lives.



I’d not got off to a good start, forgetting my mobile phone and therefore had no contact with Claire, which was already stressing me out. I left her a voicemail from my work phone with a number to call me if she needed.

A few of my closest workmates where on duty and could tell I wasn’t myself, I hadn’t told anyone until then that Claire was pregnant and when I told them what had happened with our scan the day before, they said I should go home, they know we’d been through over the years.

But as normal, I tried to bury my head and just keep as busy and as distracted as possible, an easy enough task on a busy surgical ward.



I’d started my shift at 07:30 and by 18:00 was on my evening break. There were a few others in the Staffroom but I had just sat myself in the corner.



It had been a busy and long shift, the stresses of the day before replaying itself through my mind over and over again on a constant and endless loop, this was the first time that I’d stopped all day.

I sat down, didn’t have the distraction of my mobile phone, and for the first time that day was alone with my dark and crushing thoughts.



I was soon crouched over, at first silently crying, aware that others in the room must have noticed, but I couldn’t stop, I couldn’t look up, I could hear that others had realised what was happening before them and quietly leaving the room, another of my friends came over to hug me and ask what was wrong but I just couldn’t answer, I’d went past that point and just couldn’t speak, couldn’t look up, I can vaguely remember someone coming back in and saying that everyone would cover my shift for me and I could go home.



With no memory of leaving, who it was in the staff room looking out for me, or how I actually managed to get back, I somehow found myself back at home.



The feelings heading back to the women’s this time were different, Hannah was staying with my parents, we’d dropped her off and headed straight to the hospital to end the pregnancy of our fourth child.



We were in a side room which gave us that bit more privacy, and it just felt so much more sterile.



We’d knew what was coming weeks before, and this time when Claire was in theatre I didn’t meet up with anyone to distract me, we both felt that we were beyond the point that this could hurt us anymore, we’d hit our tipping point, felt numb, and what was actually happening blurred as I headed home and lay on our bed for and hour, with the feelings of something being physically and mentally taken away from us hitting home all over again.



I just felt so hollow, after our first loss i described something being taken away from me that I felt would never return, and it was now happening all over again, something within me was being stripped away while Claire was having our fourth child taken away from her body.



This defect had killed me, i was not me anymore, the person I was before this all happened has simply been stripped away and forever gone.



I would never have allowed anything to happen in which Claire and Hannah didn’t have me there to support them, but I secretly craved for this torment to be over, as I’ve mentioned before my mind is just unable to switch off, I was tired of being tired, just exhausted with the mental grief and trauma of what the past few years had put us through, the daily grind of it all and the feeling of this overwhelming and endless torment.



If I could have slept and not ever woken up I’d have happily drifted off.



We were back home, I had days in which I simply just couldn’t get out of bed, I’m ashamed because Claire was having to get on with life, look after Hannah, with all she’d been through.



What followed was something that I’ve said previously I’ll discuss separately, my coping mechanisms and general life choices took an increasingly and destructive downward spiral, both on my own health and marriage. I was drinking too much, still do in fact, there wasn’t an off switch, nights out would end with me waking up on the couch, no memory of getting home or how I got the cuts and bruises on my face, didn’t care.



I finally realised just what I was doing. This is again something I’ll speak about separately, but realise that I somehow had to make some form of a positive from the negatives that where completely overtaking and suffocating my life before it completely destroyed me and took away the small part of me that had somehow still managed to survive.

 

[Barry Horne's Love Child]

Part 6



When I look back over my life 2014 became the turning point, the period in which I had to either fight back, or be swallowed up by the grief, chaos and anger in which my life had become enveloped within over the past 4 years.



It had been a complete rollercoaster of emotions, we’d found out we were pregnant on four occasions, been forced into making the heartbreaking and almost impossible choice to end two of our children’s lives, lost another through a miscarriage only hours after we’d had to decide whether to end his or her pregnancy, and finally had our healthy daughter, Hannah, but lived through the stress of Claire’s surgery and future fertility scare.



There were three huge steps that helped me move forward during the year 2014.



First of all, Claire and I were offered genetic counselling to try and establish the cause as to why such a rare condition was repeatedly effecting our pregnancies. We knew that what we were going through wasn’t normal and as with most things in life, felt that if we could have any kind of a clearer picture in our heads, or a reason as too why this was happening, then it may just make this whole ordeal that small part easier to live, process and move forward.



Claire was working the day a doctor from alder hey hospital came to our house, she met Hannah, and began to take down a history of both Claire and my own family tree, a history of chronic illnesses, birth defects, surgeries etc, I also had to consent to samples of our unborn children being used in order for us to find out these answers.



I’m a type one diabetic, i knew that this was unlikely to be a factor in any of this but that tiny lingering doubt was just one of the hundreds of things that had been niggling away insidiously within the back of my mind and not allowing me to sleep, too ever switch off from the persistent nightmare I’d found myself living within.



Another reason why this was important was for the sake of my siblings, Paul and Louise, both where in long term relationships and engaged to their partners Britta and Ste, and neither couple had children at this point.



It was important for us to find if there was any genetic risk as it would help them both either put there collective minds at rest, or at least if they knew there was a risk be in a position to be able to take the necessary precautions in advance.



We had our genetic counselling appointment at alder hey, and found that there had been no genetic reasons for us suffering from reoccurring neural tube defects, and that for us, the most likely reason was down to a malabsorption of vitamin B12, a common cause of defects such as anencephaly.



This was huge news for us as at least we knew why and what we were dealing with. It would also help put my brother and sisters minds at rest knowing that there was no genetic reasoning that we as a family may have carried that would put there potential future pregnancies at any kind of extra risk.



We also found out that we would have again, had a baby girl. In every pregnancy that we have been able to find out the sex, each has been a girl, which is unfortunately the dominant sex when it comes to the gender most affected by anencephaly.



The second part moving forward that year was me changing jobs. Everyone I worked with between 2008 up to 2014 had been hugely supportive of what Claire and I had been through. They’re shared the collective joy of our marriage in 2009 and Hannah’s birth in 2012, but had also witnessed my downward spiral and destructive coping mechanisms over these years.



Don’t get me wrong, the days I had to be in work I turned up in the manor a professional should, the days I had to take charge of the ward, I did and was always able to do so.

I took my job seriously and if I needed to be in work the next day it was always a case of just stopping, sucking it all up, trying to switch off, trying to sleep.



Just sometimes I’d turn up with a face full of cuts and bruises.



Being a type one diabetic has its few advantages, no one can question you saying “I had a hypo and passed out” when the elephant in the room is everyone correctly suspecting that maybe you went out and got drunk a few nights before, and face planking the floor as you stumbled on home.



My friends upon the ward had been there for me but also been the witnesses to my many low points over these years, every work night out was a minefield between me having fun and just generally making a fool out of myself. Never remembering getting home, helped into taxis, stories of falling over and slamming my head against a floor or wall.



The weekend we had found out that our last baby girl was affected I went on a work night knowing that it was a bad idea.



I passed out at the Venue, was woken up by a friend, and spent an unknown amount of time crying under the flyover on dale street, sitting in the darkness, telling her that my pregnant wife was at home with a baby who wouldn’t be there in just a few days time.



I needed to move away, needed a period away from were everyone knew my story or had seen me at my lowest points, although I knew that most of my work friends understood what Claire and I were going through, I was still that guy who got hammered on every night out, and I absolutely hated myself for it.



I’d applied for a job upon the Intensive care unit, never realistically thinking I’d get it as in my mind critical care nursing is the absolute pinnacle of the proffesion in which I work.



If i got this job I couldn’t mess around or ever chance not being in an mental of physical state to work, I’d be looking after the most unwell, vulnerable patients within our hospital and it was that sharp focus that my mind needed to now switch towards.



I had what to this date was one of the most natural and easiest going interview I’ve ever had, and been told since that I scored the highest marks that the two people interviewing me had ever given, I got the job, it gave me a new focus, something to throw myself at. I can now say in hindsight that this was one of the best decisions that I’ve ever made in my life.



The third part became my desire to try and help others, I’d reached a point in which I just had to try and make some kind of a positive from such a devastating negative.



I’d looked into online anencephaly support groups from 2010 onwards and had found that the vast majority had been either American based or overwhelmingly of a Pro life stance, the general message was to encourage people to carry on with pregnancy to full term, and the language or opinions expressed towards those who didn’t was horrific to read, especially as Claire and I were within this group of people who would seemingly be excluded from a support group in which we may have wanted to, and by default of our circumstances should have been equally invited to join.



I decided to start my own online support group, the basis of which would have the non negotiable rules for all our members.



1. Too support anyone affected by the diagnosis of a neural tube defect pregnancy.

1. support for anyone regardless of how they have chosen to continue with or end a pregnancy.
2. No stigma or judgement to be placed on anyone going through a pregnancy loss.
3. That it would be a safe, non judgements support system for all members.

I got in touch with my friend Paul, who’s working background is in websites and web design. He agreed that after some research if his own that there was a lack of support from a UK standing, and agreed to help me both build and run my own website.

We discussed the running costs being funded via an annual fundraising and sponsorship events that I’d arrange.



I had also contacted other anencephaly support groups that where up and running at the time, it was a different internet world back then and most site were very basic and self funded, I asked if I could invite there members into the site I was looking to set up and the vast majority agreed.



These sites where run by parents who had lost their child, they were in the same position I was in, and had also just been trying to help others, they generally had a small number of members, based from all over the globe and were just trying to help others that were in the same position in which they had found themselves, looking to help support each other in any way they could.



As I was researching I found the group that would change everything.

A recently set up support group via the charity SHINE had just been launched.



The charity had set up a support group for anyone affected by neural tube defects.

SHINE stands for spinabifida hydrocephalus information and equality. Understandingly a larger part of the charities focus is for those affected by spinabifida and hydrocephalus, as these are neural tube defect in which life is sustainable after birth.



I approached the group and spoke to a amazing woman, Martine. She was at that time running the charities anencephaly support group, and after much discussions and talking about my desire to set up my own group, she allowed me to become an administrator of the charities support group. The charity essentially supported the same vision that I had in terms of providing a safe and non judgemental support system.



I called Paul and he agreed that it was the correct thing for me to do, having an actual charity in place allowing me to move forward and reach so many more people almost instantly, most importantly the charity shared the same values that we’d looked to run our own group by with the focus of a non judgmental support system being paramount.



I can’t thank Paul enough, he was willing to help me and I know that if we’d started to run our own website he’d have been in full support and helped me in any way he could have done.



I do however owe a lot to SHINE, the conversations I’ve had with Martine, Robin and Marie among others have helped me on a personal level so much.

I really hope I’m not forgetting anyone, but this charity had helped by just allowing me to take an active part in the running of our anencephaly support group, which now has over 620 members, it’s given me some kind of control but most importantly given me a platform in which to make some form of a positive out of the overwhelming negatively that my life had become.

 

[Barry Horne's Love Child]

Part 7



The intensive care unit can be a particularly stressful area to work within, i love working here, it brings out the absolute extremes of life and I’ll say again that I consider working within critical care as the pinnacle of my profession.



After much discussion, and being over three years since we had lost our third child to anencephaly, Claire and I made the decision to try again for one last time.



Our choice was based upon a huge desire for Hannah to not grow up as an only child. As mentioned previously Claire had lost her older sister, Michelle, as a teenager and we didn’t want Hannah to grow up without a sibling. We understood that this was essentially out of our hands, we’d had four pregnancies over the past 7 years, but felt we had the strength within us to try again for just one last time.



One thing that made everything that small part easier for us was that my sister Louise and her husband Ste had became parents to our niece Freya. This helped us so much as we knew that no matter what we went through Hannah would never grow up alone, with the way our family was, and living in such close proximity to each other, we were determined that they would grow up being as close too each other as could be.



It had to be a 100% one last time though, and after a lot of consideration I had made one solid decision. The day Claire found out she was pregnant, I’d arrange to have a vasectomy. No turning back, one last shot, if this pregnancy didn’t work out it would be our final chance and we could at least feel we’d given our chances of becoming parents again that one last shot.



Claire was back on her three month preparation of folic acid, we nervously accepted that we were again pregnant, and I made my gp appointment.



I had began to recognise the stress that I was under, and what would have normally been a regular working day, ended up with me again feeling like I was beginning to implode upon the internal crushing stress that I faced.



Claire was around 8 weeks pregnant, the stress and general helplessness of us merely having to wait to find out the fate of our final pregnancy was beginning to take over.



This was our last chance, no matter what was to happen, this was our absolute last chance, and the slow build up of stress had finally fractured my system.



Someone who I’d know for a long time, as both a work colleague and university lecturer came to review my patient.

Someone that Id had an absolute huge respect for throughout the duration of my student and post graduate life became the person who was there on the day, that hour, that minute when I snapped.

I’ve not ever seen her again since this day, and if she somehow ever reads this I hope she understands and accepts my apology.



With what I’d normally have perceived as a mild criticism, or been able to explain with the usual calm explanation of events that can occur, something happened, something not within my normal nature snapped and I saw red.



Before I knew it, i’d come back into focus and heard “Ian. This isn’t like you, I’ll have to speak to your manager”. “Go on then” was my reply, in that moment, drowning within the tsunami of my own personal stresses and nights of sleepless torment, I really didn’t care.



I could hardly respond that my wife was pregnancy for the fifth time, that we’d lost three of our children to a birth defect, our only successful pregnancy led to her having surgery to remove an ovary mid pregnancy placing our only ever healthy child at huge risk, that this was very much our last ever chance as no matter what, I was having a vasectomy and was stressed beyond the point of thinking straight or functioning.



The ticking time bomb that i’d lived under was overshadowing our lives all over again, the combination of my work and home life, I was also trying to complete a post graduate university course, it was all taking its toll, I was once again not me all over again.



I had my GP appointment, the conversation was quick and once I’d explained our unique situation, what we’d faced over the past few years, my endless life of sleepless nights, she agreed, stated that she wouldn’t normally refer someone my age without a further discussion or reflective period, but within a few minutes of me asking, I was referred to see a urologist.



I’m again grateful for someone within the medical profession recognising just what we, or mainly I was going through, I was determined and had long ago made my mind up this is what I wanted, and the delay or waiting for a further consultation would have only added to the substantial stress I felt I was already drowning within.



I met my urologist surgeon at the spire hospital, and after a brief discussion with him, agreeing and understanding why I had chose to do this, a surgery date was booked.



It wasn’t fair on Claire, she’s spent our whole relationship taking the contraceptive pill, was now carrying our fifth child, suffered the pain of a miscarriage, two surgical terminations, her surgery, the subsequent recovery period, and finally giving birth to Hannah. It was now my turn.



My manager at work was amazing, I thought it was important to tell her what Claire And I where going through, and if there were any complaints that I was acting out of character, or anyone complained about my actions that she knew the reasons why.



Although I’d working upon ITU for three years I’d not shared my full story with everyone, but this was definitely the time to share with the select few who needed to know, arrangements were made so that I could continue to work without facing the expected stresses our workplace can throw towards us, and I’d like to say again just how grateful I am that everyone within my working life understood this.



I had many friends privately message me over this and the period up to Ambers 12 week scan, your support and just letting me know you were there will never be forgotten.



The day finally came. We’d done all we could. Three months of folic acid preparation, healthy eating, keeping fit.



This was our last chance.



We’d decided that no matter what our scan showed us, this would be our last pregnancy. We’d been through to much, we were to old, we’d been almost beaten by this and what we’d had to live thought over the past seven years. We were almost done, but it wasn’t on our terms.



My vasectomy was booked in for January 2018. This was on our terms, regardless of what this scan told us, we were going to choose and have some control as to when this all ended, this insidious condition that had taken over our lives was going to end, we had made actions to end it, I will not, or ever allow anything to beat me, we will not ever allow anything to beat us, you will simply not ever defeat us. This had to end on our terms, this shadow could no longer be allowed to hang over us or threaten to try and swallow us up any more.



If you take our last pregnancy away from us, you still will not have won. You will not be able you hang over my life anymore. This ends. I will have made the decision to end this horrific period of our lives in which you have forced us endure. It ends.



As close as you have come, YOU WILL NOT take over my life, I will not allow it, it simply will not happen.



Scan date arrived, I can remember us being strangely calm. We were back at the women’s but in a different department, the waiting area was huge.



We didn’t have to relive the torment of sitting i that same area, within those overbearing, poisonous walls again. We had some degree of privacy.

We knew that this was our last chance but it was now in some way in our own hands.



If we were to receive bad news, I would be the last time, our nightmare would at least have an end date and we’d finally be able to move forward from the shadow that had suffocated and tormented our lives.



I sat on the bus back home, ecstatically replying back all those who’d send us messages of support that our final scan had thankfully went well, a healthy baby, a fully formed scull. We were beyond relief and I felt I could finally breathe again.



We booked a private scan, around the 17 week mark for two reasons. For once in our lives, and for Claire’s fifth pregnancy we wanted to have a pregnancy we could finally enjoy. We wanted the reassurance that all was ok, and although we were having frequent bi weekly scans in the women’s we just wanted to see our child as often as possible. Each scan killing off the stress’s we’d endured over the past seven years.



Claire went straight to a private clinic in Rodney street after work, I picked Hannah up from school. On the way Hannah announced that she wanted a baby brother called David! She’d never mentioned wanting a brother before, she was disappointed, we were again having a baby girl.



With the added reassurance of all being ok I had my surgery, don’t think anyone needs to know the details other that I was awake, had a very uncomfortable twenty minutes or so, limped around on crutches for a few days, but couldn’t had been happier that this was finally under our own control. No matter what happened in the future, the suffocating shadow of anencephaly would never be able to hang over us again.



Every time we’ve been able to find our the gender of our child we’ve found we would of, or had a girl.



Her name changed three times before she was born. We first chose Kaitlyn, then Sophie, but not until she was born on the 20th April 2018 did our journey come to an end, and we had our second daughter Amber Rose S*******.

 

[Barry Horne's Love Child]

COYB25, you’ve sponsored me in the past when I’ve put links up on our forum when I’ve held fundraisers for our anencephaly support group. Hope the above shows just how much it means ;-)

 

[Big Sams Undies]

Bloody hell mate, some read that!

Well in, must have taken a lot to share it!

 

[-Rob-]

Having been through the trauma of a miscarriage in the past I can imagine your experience being so much worse and obviously over a much longer period of time so it must have been awful for you and your wife. Very brave of you to get it all written down and hopefully it will resonate with someone and help them through a tough time.

 

[tommye]

No words really, just best wishes for you and all your girls for the future xxx

 

[bcblue1878]

Well done for getting all that out like that! All the best to you and your family!

 

[kev]

That was a heart breaking read. it's really tragic what you and families like yours have had to endure.
Your experiences makes me so grateful for the relatively straight forward life that I have 'endured' and I am sure that others who may be in similar situations to yours will take great comfort from reading your story.
I wish continued happiness and success for the future for you, your wife and girls. Thank you for sharing.

 

[BNJ1878]

Quiet incredible to read. Warmest wishes to you all.

Thanks for sharing

 

[Methuselah]

Sorry, had to give up reading it, too upset. A very strong message for all us with healthy kids who take their good heath for granted. Just tells us how lucky we are.
All the best to you and your good lady wife mate.