Wow

I am writing this post through a wave of emotion which some may refer to as grief. I am not happy with this grief malarchy so I have coined a new term for how I am feeling.  I am going to call it “Wow” rather than grief. It hurts like hell which is the “ow” part but it also has the “W” in front of it because its Wordly and its Wondrous. It is self discovery and it is that self in the World discovered. I’m starting to find my place in this magnificent World having been lost in its abundance for some time. Thank you to the Wows for opening my eyes.

Wow

It’s remarkable how many new channels have opened up and how receptive I currently am to them. Family, friends, fellow baby loss sufferers, intensive care buddies, books, podcasts, quotes, philosophy, psychology, poetry, music, art –  I can take so much more in and more importantly, make some sense of it. Over the course of the pregnancy and first month as a new parent I have learnt more than I have learnt in my lifetime. This may not have been that hard to achieve (!) as school and university passed me by almost in their entirety.  I was an observer, watching and joyfully sharing in my peers’ academic successes but failing to find a path of my own through the chronic anxiety that books, essays, deadlines and dreaded examinations fuelled. I was lucky, however, to have subconsciously benefited from the gift of an incredible education. Education is a gift – I realise this more than ever when we look at a world where for many, education is the biggest restriction to progression, particularly when that education is further restricted by gender. I was fortunate enough to go to a powerfully academic secondary all girls school in London. It wasn’t best suited to my nature – I’m probably more of a tea, biscuits and cuddles kind of girl than a reciting Virgil backwards in Japanese for fun at the weekends type. However, in watching these child geniuses at work, a conundrum began to develop in my head. I was a maternal being from the outset but this was not cool at school. I couldn’t put my hand up in careers forums and announce proudly, “I want be a mummy”. I am also fully aware that it is, among other things, not financially viable to be a stay at home mummy without relying on somebody else to pick up an overly substantial share of the working burden or moving to the middle of  nowhere and living off the fat of the land – a dream but in reality probably complete hell for somebody like me, who has lived in central London for 30 years. The “among other things” includes the fact that being on the receiving end of a fantastic education with outstanding opportunity seems somewhat redundant if you end up singing row row row your boat and probably sailing off with said boat down the stream into baby brain oblivion. But, how do we “have it all”. We don’t. But I do have one tiny baby in the stars, a tiny baby on Earth who has defied science in the womb and survived a ridiculously arduous start to life; a husband who I am lucky enough to remain in a close and loving relationship with despite the stresses and strains this year has brought and who has gone back to work for us at this time to enable me to be with Constance full time for now and an exceedingly supportive family and friends network. When I need to to go back to work for financial necessity and for my own personal progression and acknowledgement of the Katie within the mummy of Faith and Constance, I will, safe in the knowledge that you can’t have it all but you can have some of each part – and the sum of the parts becomes the whole.

Wow

Through my teens and 20s I struggled to make sense of who I was or where I wanted to go. Ultimately I should have looked to the beginning when it was all so simple. I, like many little girls, was a fully committed mother to 3 dollies. Georgina (rather on the large side…would we call her chubby?!!) and then, somewhat ironically, twins named Ben and Rebecca who also, somewhat ironically, happened to be on the minute side. I spent hours upon hours explaining to my imaginary mummy friends that though there was an obvious size difference, they were, in fact, all the same age. This is probably something I will have to spend many more hours explaining when tiny Constance comes home and we start venturing out into the World. Its funny how life brings you full circle! I mention this because finally I feel, for now, right where I should be. Although it is, at times, immensely painful and the journey that Fred and I have been on over this past year has been far from plain sailing, it has certainly shown us the way – rather strongly, I might add, but maybe its exactly what we needed to face life as it is, wake us up and shift us onto the path we were destined to follow.

Wow

Constance is 4 weeks old. She has upped sticks and moved into a little plastic tub with a heated mattress and importantly with no roof so we can now touch, kiss, stroke and cuddle her to our hearts content without the barrier to entry that the incubator sadly created. This is a huge step forward as it also means she is mostly managing to regulate her own temperature. She is humbly working her way past the 2 and a half pound mark which we hope will reach 3 come her Sunday weigh in. The doctors, nurses and support workers remain exceptional with their devoted care and love for our family.

As a parting gift, have a listen to this song which always makes me smile and move my body in uncontrollable ways! I hope it does the same for you – turn up the volume!

https://www.youtube.com/watch?v=SnkjvECEQr4

THANK YOU for reading, listening and for your endless love and support

Much love

Katie xxx

AFTER DARKNESS COMES THE LIGHT

Hello,

I wanted to start by saying a MAHOOSIVE THANK YOU for the unbelievable amounts of love, support, generosity and care from everybody who has crossed our path be it those we haven’t met yet but who’ve read our story and contacted me, relatives, dear old friends or amazing new ones – we really do not know where to begin to thank you for all your messages, letters, calls, food deliveries, pressies, packages from abroad and endless LOVE that we feel from every corner of the Earth – wow, that old adage “a friend in need is a friend indeed” has never rung so true – we are in need but by gosh do we have friends indeed. THANK YOU SO BLOOMIN’ MUCH!

I hope anybody kind enough to be reading this isn’t suffering from the dreaded flu. My poor husband, Fred, has gone down with it in majestic style and is being very brave (he wanted me to add the bravery bit especially!). This means he very sadly hasn’t been able to go to the neonatal intensive care unit (NICU) to visit Constance due to risk of contamination.  At home he has further been quarantined to the back room in the hope that I don’t catch it, a double whammy of blows- sorry Manny! Secretly I think the latter might be rather more pleasant than he is letting on – no waking up every 2 to 3 hours through the night to the melodious sound of my breast pump in full swing – interestingly the company that make this pump clearly had a bit of a laugh in the manufacturing process – the sound that it emits in an unrepentantly rhythmical fashion can only be akin to that of a mooing cow!

We did, however, make one exemption from flu-gate for a very special trip to the hospital together on Tuesday to see Faith. This was only made possible by the incredible team in NICU who have been so kind to us and facilitated whatever Fred and I have wished for from the word go. THANK YOU team Nicu – we really couldn’t have asked for more.

On the day that the girls were born I had said that I didn’t want a particular service that the hospital together with the charity “Remember my baby”, kindly offer – that of a professional photographer capturing our time spent with Faith. To us, it all seemed too raw and a very private moment that we wanted to share as a (new) family. A wonderful member of staff on the Nicu team offered this service to us again when we discussed having some time with Faith before her departure from the hospital mortuary to the funeral directors next week. After some thought I realised that this might be a lovely idea. I particularly wanted to have a photograph of the girls together. I knew it wouldn’t be physically possible but the professional photographer made it possible by taking some photographs of Constance in a quiet intensive care room next to her usual busy dormitory and then coming over to a very peaceful bereavement room to take some discreet and sensitive photographs of Faith. These photographs could then be put together to create one of the twins as they were in the womb, side by side. Her photographs are so beautiful and so powerful in their quietude. We are forever grateful to the lovely photographer, Jackie who went out of her way for us – a charitable volunteer who came into our grieving wold for a brief moment but will remain in our thoughts for a lifetime due to the photographic memories we now share.

The memory making aspect of baby loss is something I have found incredibly important, both for my grief but more importantly for my joy – the memories fill me with love and happiness. I am so glad we have been given opportunities to make them throughout this journey – sadly we realise that this is not a service which every hospital can offer and for that we feel incredibly lucky but also acutely aware that we can do some work in due course to help other parents receive the outstanding support that we have.

Constance is 3 weeks old. She has crawled her way back up the scales and is now weighing in at 1.148g or 2.5 pounds – she’s got Tate, she’s got Lyle and she’s got a bit of something else extra special added into the mix too – well done little girl! She remains stable with the support of her fabulous nurses. The highly skilled specialist doctors are monitoring her closely and are comfortable with her progress to date – long may this continue! We have been given the heads up that she may even be discharged earlier than the usual time for neonates, which is around their original due date (27th December in our case). This could have meant turkey sandwiches and carols cot-side in intensive care but now might mean the full monty at home with all the trimmings! YEY!

Yesterday I had a meeting with the NICU psychologist to catch up with how I was getting on. For somebody to be asking about me seemed special at this time. Like any mother I have been so focussed on my babies and Constance’s ongoing care that I have rather neglected myself.  To have a chance to talk about how I was feeling and for somebody to be so caring and gentle with me, but also give me the space to discuss issues I otherwise wouldn’t have, was incredible. We talked about what gifts Faith has brought us as a family – I realised she has been the biggest gift of all on this journey and will continue to be. Fred and I have a totally changed perspective on life and we have discovered within us a depth of emotion we never knew we had or would be able to share with each other.

I also talked about an idea which has given me an understanding and acceptance of what has happened. Last week I had tea with the Reverend who taught me Religious Studies at school. He has since married Fred and I and both my sisters to their husbands, christened my sisters children and will hold the service of cremation for Faith in a couple of weeks. He has become a close friend of my family. He shared with me the idea that we do not have ownership of anybody in our lives – be it parents, siblings, boyfriends, husbands, children, friends etc. I carried Faith and Constance and I will always be their mother but I do not own them. I can provide support, comfort and unconditional love but they are their own unique beings and their journey/destiny is their own. In understanding this I also realised that in letting go I have not lost because Faith was never “mine” to begin with. He said “We are all part of the same eternal life and we are all contained within love” or as some might interpret, within the love of God (however this word has meaning to you). This has brought me immense relief.

Finally, I wanted to share this quote from Freud with you. A member of staff in NICU who has been incredibly supportive over our loss of Faith kindly sent it to me and it resonated so profoundly:

 “We find a place for what we lose. Although we know after such a loss, the acute stage of mourning will subside, we also know we shall remain inconsolable and will never find a substitute. No matter what may fill the gap, even if it may be filled completely, it nevertheless remains something else. And actually this is how it should be, is it the only way of perpetuating that love which we do not want to relinquish”

 

After darkness comes the light,

With love,

Katie xxx

 

 

 

 

 

 

 

 

WE HAVE FAITH IN HER!

Since starting this blog last week in the height of insomnia, shock, despair, joy and complete overwhelm, I have battled and questioned myself, wondering whether putting our story out there is really of benefit to anybody except, rather selfishly, me and that really I should write it down in a lovely book at home and keep it under lock and key; to go over in time, to use as a tool to grieve, to never read again if I so wished. As I am sure all the professional bloggers out there must feel with every post, the paranoia crept in and I wondered how it might have been received or if I might have hurt someone going through a similar scenario who was not at all ready to face their grief. I thought this is silly and I shouldn’t be using the long, lonely sleep deprived nights as a chance to release and let go to an audience, almost certainly of 1 (my faithful Mum!) and just try and get some much needed rest.

On Friday evening I saw a friend who made me change my mind. He told me he had loved reading it (thanks Ian!) but for a very interesting reason. I don’t know if you are reading now, for instance, how you came to this – maybe you saw the link in our birth announcement in the paper or my Mum or I sent it to you but for most it would’ve been through facebook. I have struggled with the social media mania we millennials all find ourselves in. I used to work in an industry where it was necessary to be present and far too often in the social media sphere – it made me feel deeply uncomfortable but for a long time I went along with it because I had quit university and I had chosen a career path in an industry that chewed people up and spat them out as soon as they were no longer flavour of the month. I chose this so I had to like it or lump it. Eventually my sub-conscious became too loud and I broke. I left Instagram and I had, until recently, quit facebook. It’s bliss and I can’t recommend it highly enough although I completely understand that for some it is an extremely important and successful tool for work, especially creatives who need to share visual ideas. I think all humans given half a chance can struggle with the narcissist within them – its natural (in moderation) and it’s what promotes survival but in modest, humble, Christian Britain it is something that has always been kept firmly in check. Social media, unfortunately in my very humble opinion, can have a terrible impact on the inner narcissist within us all – I hold my hands up and fully admit that I was a member of this category, feeling a far too temporary buzz as someone (almost certainly not a close friend you have nurtured a proper relationship with using your time and love) “liked” your photo and then further down the track suffering the unavoidable crash in self worth because none of it is real and the instant gratification short circuit that strengthens in our brain as a result of social media, for example plays havoc with the healthy effort/reward loop and destructs self confidence, worth and happiness. I had to step away.

I rejoined facebook a couple of months ago when this pregnancy trauma began to escalate in our lives. After Faith was diagnosed with severe brain damage I felt lost and frightened. I got in touch with the Twin and Multiple Birth Foundation (TAMBA) bereavement support network. They advised me to join the private bereavement group on facebook which you could only join if you had suffered a twin or triplet pregnancy loss. I went for it, signed back up and it was the best decision I ever made for handling the following weeks that played out. This was social media at its best. This was real. It was empowering. It was was beautiful. Nobody cared on there who you were or what you did or moderated their stories so as not to alarm, hurt, worry or at the opposite end of the spectrum to impress, boast, compete. We shared and continue to share all our worries, excitements, fear, anger, advice and the support and strength I have gained from these amazing women has been unbeatable. When I was sitting having a conversation with our friend Ian on Friday night, he said that the reason he had so enjoyed my post was that it’s exactly what social media should all be about, honesty, and that sadly it was all too often about the opposite – the fake, the unobtainable, the materialistic. So I will, thanks to Ian, continue to write on here in the knowledge that nobody is probably reading it anyway and if they are it’s because they are choosing to. I also hope that in doing so, I will reach others suffering who are in need of an ear or a hug or some empathy from someone who really knows how it feels. I am here for you.

Constance is 2 weeks old. We have settled into a hospital/home routine that seems to work for us for now. I visit Constance alone for the morning and Fred and I meet together again in the hospital in the evening so that we can spend some time with her united as a family. Constance is a gentle soul – she rests much of the time as her little body uses all its might to pack on some ounces. She is on the 9th centile for weight for her gestational age which in non medic speak means that she is near the lowest end of the spectrum – Mumma needs to keep producing more milk!

Beautiful Faith is currently in the morgue of the hospital and we plan to visit her in the Chapel of rest this week. I really look forward to the time we can spend with her – I have some beautiful memories from the day of the girls’ birth when she was brought to me in a wicker basket, dressed in a lovely pristine white linen dress with a tiny knitted woollen hat the size of a dippy egg cosy perched on her tiny but perfect head. I was, however coming down from the epidural – the dihydromorphine made me shake, tremble and chatter uncontrollably whilst projectile vomiting and itching like a mad woman (good look?!) so I would love to spend some more mindful and awakened moments with her now.

I placed our girls’ birth announcement that was in the Telegraph on facebook – again I’m not sure whether this was appropriate but it felt like the right thing to do at the time. I took inspiration from a beautiful 14th Century poem by Hafiz – of special relevance to my family as it was framed and given to my mother by my Godparents when she had suffered a baby loss, sadly in the form of cot death. Here it is in all its splendour:

This house hath been a fairy’s dwelling-place;
As the immortals pure from head to feet
Was she who stayed with us a little space
Then, as was meet,
On her immortal journey went her ways.

So wise was she- yet nothing but a flower;
Only a child- yet all the world to me;
Against the stars what love have any power!
Or was it she
Went softly in her own appointed hour?

The title of this post is “We have Faith in her” – because we do have faith in Constance, that she will keep growing and fighting as she is doing a remarkable job of right this minute – I know that a mother shouldn’t say this about her baby/child as it can seem rather boastful but I have to say that Fred and I are extremely proud of our tiny little scrap who is certainly not out of the woods yet, but is doing a damn good job of ensuring she’s nearing the boundary and that she’s not going back to base camp if she can help it! We also have Faith in her in a more literal sense. On Saturday night at 1am I was staring into Constance’s little plastic encased world, trying to avert my attention from a set of twins who had just been placed in a cot next door to her, with tears streaming down my cheeks. I realised that I too was looking at my set of identical twins, its just that they both live in Constance now. I can live far more peacefully with this in mind.

Thank you if you felt able to read and for the continued messages of love and support. It is wonderful to receive them and you all keep the memory of Faith alive whilst sharing in the joy and delight of darling Constance – this has meant the world to me as it is something I feared most after I lost her – that people wouldn’t mention her name for fear of upsetting me or because they weren’t sure how to go about it. I love her being mentioned in whatever capacity so please, a message from a mummy of identical twin girls – never worry and always ask me whatever you want to know about Faith or Constance –  I will be as honest and open as I can as I think this is what really helps people understand and creates awareness and knowledge for future mummies to identical twins having a tough time and an even better support network for them that I am already so lucky to be on the receiving end of. THANK YOU.

Much love,

Katie xxx

LOVE CONQUERS ALL

Ironically but somewhat serendipitously our babes decided to make an appearance on Planet Earth in Baby Loss Awareness Week which ran from the 9th-15th October this year – Faith and Constance wanted their birthday to be on the 10th when my waters broke but they managed to hold on whilst the doctors administered the necessary steroids and drips into my arms to advance Constance’s lungs and heart rapidly in anticipation of birth which took place on the 11th October, slap bang in the middle of Baby Loss Awareness Week!

I’m ashamed to admit that Baby Loss Awareness Week was not something I had ever been aware of before but it quickly became at the forefront of our minds this year. To launch the week, an incredible documentary titled “Child of Mine”, directed by Katie Rice for Channel 4, had its premier screening at the Curzon Soho Cinema in London. I was desperate to go and at the last minute asked poor Fred whose birthday it was that very day if he wouldn’t mind spending it at the cinema potentially in floods of tears with me rather than at the surprise dinner party I had organised for him (sorry to our dear friends who we cancelled on at the last minute – I made some pathetic excuse that I realised a Monday night was a terrible idea to get pals over and that we were overtired from the weekend, please forgive me!)

“Child of Mine” touched us to the core and provided some brilliant insight into what, unknowingly, we were about to embark on – far sooner than we’d hoped for in 2 days post the screening. It is a beautiful, heart wrenchingly honest and raw depiction of 3 INCREDIBLE super human couples going through varying kinds of still birth. It highlighted a terrifying statistic to me – 1 in 200 births in the UK are stillborn. I am sure everybody already knows this so apologies if I am stating the obvious but I actually didn’t know what classified a stillborn until we went through it so I write here a definition only on the basis that either I am quite ignorant or we need to start talking far more openly about such a traumatic event in expectant new parents’ lives:

Stillbirth is typically defined as foetal death at or after 20 weeks of pregnancy. It results in a baby born without signs of life. The term is in contrast to miscarriage which is an early pregnancy loss and live birth where the baby is born alive, even if it dies shortly after. Often the cause is unknown.

Please watch this inspiring, brave, and hugely informative documentary if you feel you are able to. Yes, its terribly sad and we seem as humans to want to shy away from pain. But through pain and suffering comes enormous strength, love and beauty. The overriding emotion I walked out of the cinema with that night was LOVE, not sadness. LOVE, deep in my heart for how incredible human beings truly are – for the couples going through the immense suffering, the consultants, the councillors, the bereavement midwives, the newborns who made it and stillborns who will forever live on in their parents hearts, LOVE conquers all.

Here is the link to “Child of Mine” which aired on TV on Thursday 18th October at 10pm but is currently on Channel 4 Catch up:

https://www.channel4.com/programmes/child-of-mine

I hope you take as much from it as I did. Get the tissues ready!

And finally, an update on our darling Constance.

She is currently stable in Low Dependency in the Neonatal Intensive Care Unit (NICU). She is making light of the uncomfortable wires and tubes strapped up to her and incessant loud beeping from her own and all her other baby dorm mates’ monitors and machines (and which Fred and I now have like a tinnitus constantly ringing in our ears when we go home to bed at night).

She is and has from birth been fed entirely from my own hand expressed and machine pumped breast milk via a tube down her throat into her stomach – a special bond since we cannot be physically side by side for much of the time. This has been a painful curse that brings me huge anxiety and makes it impossible for me to sleep – hence I am writing this post at 3.00am after a successful pumping session! I’m lucky that the milk production is one area I seem to be doing better in finally during this pregnancy! I know from talking to other dear fellow mums in NICU that it can be very tough to get the milk in manually. In my NCT classes (which as a side note, I adored – thank you to all the girls in my group for your kind support thus far – I had the latest due date of the lot and ended up being the first to deliver – good luck girls on your imminent arrivals!), it was really hammered home to us how beneficial it can be to place the baby on the breast immediately post birth and in fact also proven that full term babies will gradually nudge and root their way up to the breast directly post birth if left to their own devices.

We are getting more confident at handling our tiny baby. Post birth, babies always lose roughly 10% of their body weight due to excess fluid. This is no problem if you’re a healthy 7/8 pounder newborn but quite tough if you’re a tiny 11 weeks premature 2 pounder like Constance. She dropped from 1.019kg/2.2 pounds/a bag of sugar to 944g/2 pounds but more recently she weighed in at 974g/2.1 pounds – let’s hope by Sunday when she is next weighed she will be back up at her birth weight and that our little packet of Tate and Lyle only continues to sweeten and flourish.

Thank you for reading and for all your wonderful messages of support and LOVE – they have given us strength when we have needed it most and only highlighted the unbelievable amounts of LOVE we all share. LOVE CONQUERS ALL.

OUR STORY – FAITH AND CONSTANCE

Please do not read if this would trigger anything upsetting for you (pregnancy loss related) – I’m sorry also to post such a lengthy story via social media but it seemed like the best platform to give friends the chance, only if they wanted to, of understanding what has actually happened to us. It has also helped with my grief to be very honest and open. Most importantly of all I really hope in doing so I can be of support to any other family unlucky enough to suffer baby loss – please do not hesitate to contact me if you are suffering with similar – I would love to help.

My husband, Fred and I started our pregnancy journey in January 2018 when we became pregnant for the first time. Sadly at 8 weeks we suffered a miscarriage which was very painful but with the help of close friends and family we got through this patch relatively quickly, predominantly because we decided to get straight back on the wagon and by April 2018 were so excited to realise we had been blessed with a positive pregnancy result.

I began to feel sick very quickly, by week 6 I was throwing up between 20-30 times within 24 hours – I got through this part with the excitement of knowing I was pregnant again and with huge support from my family who sat by the loo with me through the day and night. The sickness continued like this for a further 5 months.

I had an early scan at 8 weeks to check everything was as it should be this time round. Extraordinarily I had been having dreams of twins and it had crossed my mind that since I was being sick quite so much, this might be the reason why as Twin pregnancies double your hormones and can make women very sick indeed. The Gynaecologist laughed when I asked him pre scan if I could be expecting twins and confirmed post scan that it was just the 1 baby. I again was scanned at 10 weeks and the same information was given to me – it can sometimes apparently be tricky to spot twins as one can hide behind the other!

At 12 weeks I went for a scan at the Foetal Medicine Centre which is an incredible scanning unit founded by Professor Kypros Nicolaides – a pioneer and legend in the area of foetal medicine. Luckily Fred came with me at the last minute as when I lay down and the scanning started, the sonographer asked me how many babies we were expecting – we laughed and said “good one, you nearly had us there, we’ve already had 2 scans so we know its just the 1” – he wasn’t laughing and told us we were actually expecting Monochorionic (1 shared placenta) Diamniotic (2 amniotic sacs separated by a membrane) Identical (1 egg that splits) Twins or in our special terms the babies have 2 separate bedrooms but share a kitchen! We couldn’t believe it – shock, joy and histerical laughter ensued as he continued scanning.

After lengthy scanning he told us that both babies looked well on today’s scan, a huge relief. He then, however, filled us in more about this type of twin pregnancy. He informed us that Identical twins sharing a placenta can become more complicated as the pregnancy progresses. The main topic he focussed on was Twin Twin Transfusion Syndrome (TTTS). Fred and I had never heard of this and as we learnt more, were worried but not overly – the statistics sounded favourable – it occurred in about 10-15% of identical twin pregnancies – an 85/90% chance of not developing it, we thought, to look on the positive side. TTTS is a condition particularly monochorionic diamniotic twins can develop because they share a blood supply. One baby (the donor) transfuses blood through the placenta across to the other baby (recipient twin). This can have a devastating impact on both twins if not picked up and even when picked up can still have fatal outcomes (as in our case). Selective foetal growth restriction (sFGR) was also a concern with this pregnancy along with a condition known as TAPS (Twin Anemia polycythemia sequence, another form of TTTS). He told us that we would need extensive scanning to ensure if one of these conditions did occur we could pick it up and get treatment as soon as possible.

We transferred our care to Queen Charlotte’s and Chelsea hospital, one of the best in the country for handling this kind of pregnancy and also crucially nearby where we live – essential as our journey progressed.

Scanning at weeks 14 and 16 showed healthy babies, a little small but nothing to be concerned about as twins are often on the smaller side.

At Week 19 we got diagnosed with Stage 2 TTTS and were told we needed an emergency operation immediately in the form of Laser Ablation to try to save both twins. If we did not proceed with this they warned that both babies had an 80% risk of dying and that this risk was imminent. The statistics for success rates of the operation sounded good – 70% chance of both babies surviving, 85% chance of single twin survival. We agreed and had the treatment that very afternoon – not particularly pleasant for me or indeed the babes – they operated by pushing a probe through the wall of my uterus and directing laser beams down it to seal off blood vessels on the surface of the placenta transfusing blood in an unbalanced way. Obviously any intrusion of this kind carries with it risk of miscarriage, brain damage to one/both twins, the list goes on.

The operation went well and I stayed in hospital to recover and be closely monitored (the highest risk of miscarriage post operation is in the first 24 hours) – after a highly anxious night, a consultant scanned me the following morning and was pleased to inform us that 2 heart beats were present – we were overjoyed.

We had to be scanned far more regularly initially and then weekly post this operation. The 20 week scan looked positive and we were so happy, the only negative being that during the laser ablation, the beams burnt a large hole through the membrane separating our 2 babies so that now our pregnancy was Monochorionic (1 shared placenta) Monoamniotic (1 shared amniotic sac) – they now shared a bedroom and a kitchen!

At the 21 week scan we suffered the horrendous news that sadly our donor twin had been severely and irreparably brain damaged. Our hearts broke. We then heard the further news that in order to give the healthy recipient twin the best chance of survival it would be best to have a further invasive surgery called Radio Frequency Ablation to terminate the life of the brain damaged twin. I would still remain carrying both twins for the rest of the pregnancy as it wouldn’t be possible to remove the demised twin as they were so intrinsically linked and particularly since they now shared the bedroom too. We were devastated.

After much thought and immense pain, we decided to go ahead and have the radio frequency ablation in order to give the healthy twin the best possible chance of survival. Just before they went ahead with this operation, we decided at this stage to find out the sex of the twins – we were having identical girls and we named the donor twin Faith and the recipient twin Constance.

The operation itself was incredibly painful physically and mentally – again they inserted a probe through the uterine wall and directed radio frequency down it to occlude the blood flow in the umbilical cord to Faith. Due to the fact that I was having this procedure relatively late on in my pregnancy at nearly 23 weeks, the umbilical cord was strong and proved difficult to occlude and post 5 rounds of the treatment and huge physical pain on my part (I used gas and air as pain relief) they injected through my uterus and into the heart of Faith to ensure her heart stopped beating.

I was sent home to recover from the trauma of this operation and I slowly began to come to terms with what had happened. Again there was a high chance of miscarriage/ premature labour as a result of the invasive operation. I tried to remain calm and quiet at home gently resting as much as possible over the weeks that followed. I also contacted the Twin and Multiple Birth Association (Tamba) bereavement support service and signed up to their private facebook page which you can only become a member of if you have suffered a bereavement in your twin/triplet pregnancy. The support on there from mothers going through similar suffering has and continues to be astounding. I also have had incredible support, advice and care consistently with all the amazing teams helping us at Queen Charlotte’s hospital – I could not be more appreciative of their help and the time they have spent with us be it bereavement councillors, nurses, sonographers, doctors, consultants, professors, midwives – these people work tirelessly and with so much skill, devotion, sympathy, love and, kindness – the NHS is truly remarkable and we feel so lucky to be on the receiving end of such an incredible and unique healthcare system. Its truly remarkable.

Scanning and care continued as we progressed nervously through the pregnancy. Initially I found it very hard to cope with the fact that Faith remained inside me and that I would have to continue carrying her until 36/37 weeks potentially. I soon realised that it was a blessing to continue carrying the twins together – they needed each other and they belonged together.

I was supported and advised by the hospital over the next few weeks, having regular ultrasound scans and an MRI scan of Constance’s brain performed at 24 weeks which confirmed her brain looked normal for the gestation – major relief.

At exactly 29 weeks my waters broke and we rushed to hospital where I was admitted permanently and advised I would need a C Section as soon as possible to get the babies out as the risk of infection now became too great. I had a round of Steroid Injections to advance Constance’s lung and brain development and was put on a magnesium sulphate drip to do the same.

Constance Faith Schiff arrived at 16.21pm on 11th October weighing 1.019kg. Faith Constance Schiff was born sleeping shortly afterwards. A fantastic team of neonatal consultants, doctors and nurses worked immediately on Constance to check her thoroughly and support her breathing and she was then quickly rushed to the Neonatal Intensive Care Unit (NICU) where she was placed in the high dependency room. Fred went with her.

I went to a recovery room and waited for Faith to be brought to me. This was such a special time which I will always cherish. Fred rushed down from NICU to be with us and with the help of the bereavement midwives, we started collecting memories – her footprints, handprints, videos, photographs. We will never forget the precious time we spent with our darling girl. She was perfect.

In time I was taken to a different ward where I remained to rest and recover whilst Fred went back to NICU to keep close to Constance and be updated by the neonatal team of her progress. The next morning I was strong enough to be put in a wheelchair and taken to see Constance – a truly magical moment.

I started to pump my milk almost immediately for her. She is too young to breastfeed but I pump every 3 hours and then the milk is drip fed into Constance’s tiny tummy.

We left hospital to go home 5 days after I was admitted and now spend our time visiting her, having skin to skin, pumping, hugging each other and getting far too little sleep – welcome to parenthood I guess!

As I write this I am exactly a week on from the birth of our babies. Constance has remained stable and been the tiniest but bravest little trooper. The neonatal nurses, doctors and consultants are in a league of their own. They have monitored, cleaned, fed, calmed, cuddled, sung, and chatted to Constance round the clock. They have provided sympathy and fabulous support to Fred and I. Their energy, love and care knows no bounds. These people deserve every accolade going. Our true heroes.

Constance has, of yesterday, been moved to low dependency – Fred and I are in total awe of her but it is only with the help of every single person along this journey that we are here today. We pray for continued progress for Constance (and maybe for a little bit of sleep!) and we thank everybody for reading our story so far.

Katie xxx