Updated on Oct 10th 2012 at 11:44 PM from the JustGiving API

Huge thank you to Carol and the staff at the Quay project who have raised an amazing £270 in memory of Freya doing their sponsored Rhyl to Holywell walk! Thanks so much xxx

Simon and I had waited a very long time, 7 years (since our first loss, suspected ectopic miscarriage) for our beautiful daughter Freya born at 9.03pm Wednesday 10th August 2011. After years we were initially told that we would never have children, but we didnt give up and were given hope by the first specialist genetics team we met. However hospital after hospital (and we went to quite a few!) our hopes seemed to deteriorate as our realisation of how difficult any chance would be sunk in. But we knew that a chance, any small chance, would outweigh our pain and determination got us through. With the help of some amazing medical staff (which includes two wonderful GP's who have supported us through all the ups and downs) we knew we had to try!

Eventually embarking on icsi ivf being told that it was very unlikely to work due to the other complications, that perhaps the best we could hope for from it would be repeated miscarriages. We were determined to try. After heartbreaking disappointments (we lost two embryos exactly a year to the time Freya was born) the unbelievable happened, we were pregnant!. We found out on the 20th Dec, the perfect Christmas present. But then Christmas eve spent the day having medical tests as they thought it may be an ectopic pregnancy, first scare over with, but they didnt end there. We didnt get to celebrate that Christmas but it didnt matter we were looking forward to Christmas 2011 with our new baby. I suffered severe pains from overstimulation from the ivf, I couldnt even walk most days the pain was so bad.

We were told that due to other complications (genetic translocation) we were told that we were at risk of the baby being so badly affected that a termination for medical reasons may be needed. We would have to take a test at 16 weeks that could result in miscarriage from the procedure itself to find out but would have to wait another 4 agonising weeks for the results. We agonised about taking the test what if it came back clear and we miscarried because of the test...but eventually we went ahead.

We were also at very high risk of miscarrying up to 20 weeks,but especially in the first 12 weeks (as well as an increased risk of still birth). Everyday was a nightmare, lots of invasive procedures later (including amnio & post amnio complications) and countless serious scares, bleeding, pain, being told they couldnt get a heartbeat on several occasions and having to wait hours for a scan, numerous trips back and to to the hospitals, bleeding in pregnancy and being told at the 16 week scan we had a low lying placenta, (which we now know can be risk indicators of Vasa Praevia) our little girl proved to be an inspiration to us all, incredbily strong! Despite the overwhelming odds against her throughtout the pregnancy she proved to grow and develop perfectly, she was our miracle baby! We were really lucky to have two exceptional midwifes looking after us up to the 20 week mark at that time (though they werent actually allocated to us, it just hapened that way, they were very experienced, explained everything, reassured us and took no chances. After that time they didnt look after us again regularly until after Freya's death as they werent our allocated midwives).

The amnio results proved Freya was not affected by the genetic condition, wasnt even a carrier of the condition (for which there was a 50/50 chance) and was a perfectly healthy developing baby. We were all incredibly excited to meet her we couldnt believe how lucky we were.

Being high risk we were monitored regularly, had a great team of staff around us and had numerous ultrasound scans and were given the all clear. Numerous risks were discussed, Id read everything we could find on bleeding and possible complications of this and ivf. Never did we come across Vasa Praevia. Despite having a very painful and difficult pregnancy, I was even on crutches in the final months our little Freya was doing great and that was all that mattered (we didnt know then that pelvic rest is recommended for VP in the later stages of pregnancy as anything strenuous can cause the vessels to rupture and hospitalisation is also recommended from 28 weeks for monitoring and quicker access to c section should bleeding occur, as time is critical). 

Freya was a perfectly healthy baby developing well ....every parents dream. Eventually putting our fears aside we began to try and relax and enjoy the pregnancy a little, we had been through so much already we hadnt dared allow ourselves to relax or get too excited too soon. We had even been to scared to buy anything for a long time and were a little envious of friends pregnancies, though incredibly grateful to be blessed with this pregnancy, but we had made it, we let our guards fully down finally, all our hopes and dreams had come true. We felt like the luckiest people alive! We decorated the perfect nursery for her, everything was ready and waiting....we could hardly contain our excitement. but we knew like all other expectant parents there are still some risks. After hitting 37weeks though we thought all would be well ( little did we know). Freya was doing so well discussions of a c section were changed to a natural delivery, she was going to be about 8lb plus! we were told at the scan the day she was later born. We couldnt have been happier. We were totally broke finacially by this time, having had to take so much time off work, something else we never had thought would happen, but it didnt matter our little girl was soooo worth it, it didnt matter what we had to do to get her here safely. 

All that changed on the 10th August 2011, the day our little girl was born. For many weeks the severe pain I was experiencing had been getting worse and worse. Id told my midwife several times but was reassured it was normal. I couldnt understand how but Id never been this pregnant before and combined with the fact Id also had constant pain since the ivf and then had spd as well. So took the advice... as the weeks went by the pain became unbearable.....I couldnt even touch my stomach without flinching. I continued to tell the midwife but continued to be reassured it was normal. (I now know the symptoms I was experiencing, especially in the last few weeks were far from normal - though apparently not related to Vp)

Anyway back to the 10th Aug, I had had a ultrasound scan in the morning, was told all was well, really well. The lady that scanned me even commented on what a precious pregnancy this was. (Baby wasnt in the head first position despite being full term but was definately in the right direction so again no concern raised nothing too unusual - but this too can be a possible indicator of VP as the baby appears to try not to compress its own vessels). Then I was sent for a monitor check and speculum exam by the hospital doctor as the midwife thought I might already be in labour as I was losing fluid (and I had been having very painful preterm contractions for weeks, especially the last few days in work. My last day in work Id cried all the way there and back as well as a few times literally hanging off the walls in the toilets with pain and contractions before putting a brave face back on and going back into the office like everything was fine. 

Exactly a week (to the day) before I had been to see a midwife as the pains were becoming unbearable and the ongoing constant pain Id had on the right side of my stomach had now spread to the left side which appeared to be directly over where Id been told the placenta was, I was so sore and tender even to the touch on my stomach that the midwife couldnt even examine me properly but stated it was practice contractions, a good sign). Anyway, I was actually really reluctant to have the internal exam at the hospital (I had refused throughout the pregnancy) as they had always caused me some bleeding, but I eventually decided to go ahead as I was advised this was the only way 'to know' and I even commented to the midwife and doctor that 'well at least if it does bring on labour now our baby is full term all will be well' This midwife also commented about the pain on the left side ' I wonder whats going on there to cause that' but I explained I had pain on the right throughout but it had now spread to the left. (we now know internal exams should be avoided with VP as it can cause rupture). Anyway I was given the all clear by the doctor and sent home. Within 2 1/2 hours of being home we were on our way back by ambulance.

I had felt very uncomfortable after the examination but nothing major, baby had been incredibly active on the monitor so had no reason for concern. (Though I had commented at the time that the trace heartrate for the baby appeared unusually higher than I had witnessed on the several other monitorings I had had, but was reassured all was well). My husband and I were at friends that night, we had just arrived and were about to get a takeaway when I felt like I needed to urinate. On going to the bathroom and doing so I got excited thinking my waters had broken, I could feel fluid gushing out like a tap.....that was until I looked down to check and the terrifying realisation that I was haemorrhaging blood everywhere hit me. It was like a scene out of a horror film, the blood was everywhere. Then the terror struck me, I shouted my husband ...then waited for what wasnt, but felt like, an eternity for the ambulance.Thank goodness for my husband and our friends Nicki and James that night. Our friends helped organise everything, my wonderful friend Nicki sat with me in the bathroom, blood pouring out, I couldnt move, until the paramedics arrived. The ambulance arrived and we rushed to the hosipital. The crew were so kind, but we knew we were in serious trouble......

On arrival we feared our precious baby had died. They couldnt get a heartbeat, but the blood had slowed and a doctor came in and scanned us. The picture showed our precious baby was still alive, all was ok I heard her say. I kept asking are you sure, are you sure? as in our hearts we knew something was very wrong, the monitor showed 120 for literally less than a second before jumping to just '99' and staying there for her heartrate, our baby had always had a high reading 130/150 plus...something within us told us even the scan picture looked wrong. I still couldnt tell you what it was that made me think it was wrong....in hindsight I think it must have been how still my baby appeared.... but we were encouraged by the staff who were desperately trying to work out what was happening. We kept saying get her out, get her out. I asked 'if everything is ok why am I bleeding?' the doctor seemed suprised to hear I was bleeding and began to investigate further when I advised thats why we had been brought in by ambulance due to the haemorrhage. Soon after, thats when the second gush of blood /waters happened and I shouted in terror my body knew...her heartbeat fell through the floor, I begged them to get her out. Things happened in such a blur, I think I was fainting on and off......the next thing I remember was giving verbal consent and being rushed to theatre. (we now know that when bleeding occurs it is essential emergency c section is performed as quickly as possible, time should not be wasted trying to diagnose VP. Also that those who bleed at hospital and an emergency c section performed have a higher success rate than those where rupture has occured at home due to the time that lapses in getting to the hospital. We were lucky, Freya was still alive when we got to the hospital.... but as time went on the inevitable happened) I remember Simon asked if he could come in and having to tell him he wouldnt be allowed as it would be a general anesthetic. I told him I loved him and told him to phone family members. I remember asking the nurse on the way if our baby would go straight to my husband when she was born. Even in the fear I was convinced perhaps I would die but that our precious baby would be saved. My poor husband was left alone whilst I was put under general. He stood outside the theatre the minutes ticking by, each feeling like hours......to be told later that his precious daughter was unlikely to survive. He had to make those terrible calls to family, was worried about me and our baby, the thought of his pain hurts so deeply. He said he waitied for someone to come and congratulate him, to hear her cry, neither of which came, only then did he make the call to family to come. I cant begin to understand how horrendous that time was for him. Many people often forget about the fathers!

We couldnt be with our daughter when she was born, they had to resusitate her twice and had been a long time without oxygen having lost her blood (our daughter had basically bled to death inside me). On coming round from the anaesthetic the first thing I recall was a lovely lady holding my arm trying to wake me and being told the devastating news that our baby had less than 50% chance of survival. Everything in your body fights the drugs to try and take in whats happening. Our first encounter with her was a photograph of her all tubed up in scbu, we knew this was were she had her best chance, but it certainly wasnt the birth we hoped for, planned or expected. There was no skin to skin contact, neither my husband or I even saw her born, we couldnt be with her even now when she was fighting for her life. Our excitement had turned to terror and despair.....and we waited....then the staff rushed in, I remember saying 'you ve come to take us to see our baby havent you', I knew at that moment by the speed they all arrived that this wasnt going to be what we hoped for and that our lives were about to fall apart.

They wheeled me through into scbu really quickly still on the bed, my husband and family rushing in behind me. Our family were with us to meet our beautiful daughter. Her little body lying so still, machines helping her breath. From the bed I could reach just enough to hold her hand and stroke her chest. Despite being a 7lb newborn, I was amazed at how big Freya appeared to be compared to the other babies, a full term baby surrounded by the tiniest premature babies you can imagine. Surely she was strong, a fighter, if those little babies could make it surely so could Freya. We had had no warning......she had been developing perfectly well, a full term healthy baby just hours before....I couldnt understand how this had all happened. In literally a few hours our lives had changed forever. Her Daddy clung to the side of the cot staring at her, wishing her well. We just couldnt believe what was happening. Freya was the most beautiful thing we have ever seen but she looked so very poorly. They told us there was nothing more they could do..... Freya could die at any moment......again everything a blur, the pain relief machine kept breaking down again and again and I begged for pain relief I was so scared of passing out from the pain and missing her, I did not want our daughter to die wthout her Daddy and I being with her. I missed her birth I wasnt about to leave her in death. Then I remember a nurse rushing to attend to Freya and I shouted 'please let me hold her before she dies'. I wanted our daughter to know her Mummy and Daddy were finally here with her, wanted her to die in our arms if she had to die. I remember they  rushed to take her off all the machines and gave her to us to hold. We were so incredibly blessed to have that time with her, time we only had due to the amazing efforts of the doctors and nurses of scbu. Our minds were in a spin, my husband clung to his precious little girl, he held her like a china doll, with such overwhelming love, I will never forget the look in his eyes. Both her Daddy and I kissed and cuddled her and she was baptized (wearing a beautiful handknitted hat from Joshua's boxes and a handknitted gown from scbu). Freya was surrounded by the love of family and staff that cared for her. Other than one reflex action when they first removed her from the machines, where she opened her eyes for just a few seconds, she was unresponsive. I dont think anyone thought our precious baby would survive more than a few minutes but her little heart carried on for another 1 1/4hours, Freya always was a fighter but this time she didnt stand a chance. She died in our arms 3hrs and 42mins after her birth at 12:45am Thursday 11th August 2011.

Freya stayed with us all night, family cuddled and fussed her saying their hellos and their goodbyes. Thanks to the amazing labour ward & scbu staff and 'joshua's boxes' ( a charity helping those who have lost babies) we made precious memories to keep, hand and foot prints, lock of hair, photos.... Our midwife was truely amazing,she just made everything happen! the things she did are endless, I was rambling and in shock I guess as well as all over the place from the drugs. Our midwife was so so patient and overwhelmingly kind and thoughtful, way above and beyond the duties of her role. An incredible healthcare assistant helped us bath and change Freya. Her kindness was also overwhelming the way she cared for our little girl. Being too unwell to do it on my own I can honestly say It was one of the most beautiful, kindest acts we have ever witnessed. I was keen to ensure that our baby girl wore her hat from her Nana Sue, her blanket and knitted rabbit from her Nana Yvonne and her babygrow and mittens from her Daddy and I. Even in the despair something inside you 'kicks in', I knew that these things were important to us as these things were what our baby would take with her to her grave. I needed to know Freya was dressed with love. Poor Simon rumaging through a bag pulling out so many things, but I knew exactly what I wanted her to wear. I think I was probably even a bit bossy going into autodrive, nothing else mattered but our little girl, it had to be as right as we could make it. We had to cram what should have been a lifetime of love and care into just a few hours with her. All the things we had looked forward to and wanted to do for her such as bathing and dressing her were still so incredibly important to us as her parents. In hindsight I have no idea how I was even able to think these things or make decisions, let alone act on them. I guess that was my way of coping. Thats why I know Simon and I are the perfect match, we did it together. Thanks to the midwives Simon was allowed to stay with us. I lay there with my dead baby listening to the cries of other women in labour and the sound of newborn babies cry in the background. Staff did everything within their power to make things easier for us. When we moved to a different room the following morning, I still had Freya in my arms. They were juggling the needs of us and other families on the ward but we never felt it. In a strange way when we wheeled through the corridors me still lying on the bed and Freya still in my arms for those few brief minutes I wasnt thinking that she was dead, I just felt so incredibly proud of her, this is our daughter! It is incredible that the staff enabled this to happen.

All of these staff will probably never know just how precious these memories of our time with Freya are to us and how much we think of them for what they did for us as a family, as well as our little girl. They guided us when we were lost, without us even realising it and because of this we now have precious mememories which are priceless. My midwife was amazing, as well as all the other wonderful things she did, she never gave up trying to fix my pain relief machine again and again and again throughout the night. Having to phone people time after time to come. When one person challenged it, I remember feeling very protective towards my midwife and informing them it had been breaking down all night. All the staff looking after us throughout those few days were simply incredible we will never be able to thank them enough for all their efforts, but it was just too late for our little girl. No one knew of our Vasa Praevia before Freya's birth and it wasnt confirmed until after her death.

On Thursday late morning the staff arranged for a photographer to take pictures of Freya for us. He had been so thoughtful, they had taken her mittens off to take pictures of her hands, took her hat off to ensure we saw her hair, lots of little things, all the minute details of  her features were captured, as Im sure you can imagine these pictures mean the world to us! Staff then helped us to spend precious time with Freya before saying goodbye on Thursday afternoon, truely the hardest thing ever sending her to the morgue. We can not even begin to describe that shere pain of letting her go from our arms and sight. Our consultant came to see us he too had been shocked by Freya's death. That night in the hospital hearing all the newborn mums and babies was torture, it took all my strength not to go and get her, I have never needed someone so much. I felt totally physically incomplete without her. A feeling that stayed until Freya was brought back to me in her coffin for just one night.

The following morning my wonderful husband had to shower me and wash my hair, my post pregnancy body complete with c section scar so difficult to look at and take in, it wasnt even 48hrs since we had been happy, full of expectation and being told all was well. Simon was incredible. We then registered her birth and death together in a side room at the hospital again something made easier by the staff if we had not been able to do this Simon would have had to go alone to the registar office and it was important to us to do it together.

Despite the best efforts of the staff the hospital was so busy, the full wards were too much to bear, we decided to leave. Leaving the hospital without her was incredibly traumatising for us, we felt and continue to feel like part of us was physically missing. We were leaving with a box of memories instead of a newborn bundle of joy! Walking past pregnant mums smoking outside the hospital doors made us feel physically sick or new parents leaving with their newborns celebrating,  just mind blowing, we felt so robbed. It is true what they say, your body and arms truely do physically ache and you are both emotionally and physically overwhelmed by the primitive emotional and physical need for your child to be with you in every sense of the word. The pain is simply undescribable but something sadly every parent who has lost a child knows only too well. A very special person I have met since Freya's death who also lost her baby told me. It is an achievement just breathing everyday and she is so right!

The pain of losing our unbelievably loved, longed for and wanted baby is just destroying. We havent just lost our daughter, but our future, our reason to live! Our family have also been totally devastated, especially Freya's two Nana's. For us the added pain that perhaps Freya is/was our only chance of a family.........but we can not give up hope as this is the only thing keeping us going. Believe me when we tell you that everyday is heartache and there is nothing we wouldnt give for just one more second with our precious baby.

Unfortunately added to this is the pain of continuous return trips to the hospital due to further post operative complications even now. The staff are so kind and caring but nothing stops the horror of flashbacks, smells, memories of good times and bad. Being wheeled back into ultrasound for the first time since our daughters death was hard for both Simon and I! remembering what was and could of been and being forced to acknowledge what now is... ..

Then there are the uncomfortable questions....such as ' how old is the baby then', 'get your rest now if you just had a baby you wont get any when you get home', are you breast feeding then' to name just a few all feel like a knife. Seeing other babies and children is awful, we are happy for others but it hurts like a knife through the heart wondering what our little girl would be doing now, what she would look like, how she would be developing. Our whole lives have been blown apart we miss her so terribly and it has shook us to the core.

Despite quite a few problems, on the whole we can only say simply Thank goodness for the great NHS healthcare staff, for all of those who have supported us through our journey, we dont know how we would have coped without them!! the nurses, paramedics, midwives, support staff, sonographers, our consultant, the doctor who did the c section, the photographer, to name just a few and in particular a wonderful specialist screening midwife who was with us at the start when we had amnio testing and was then (as if sent by an angel) caring for us on the last day when we left the hospital (due to her change of job), that brought us such comfort seeing her that day. As did the care we received from two fantastic community midwives when we went home in the first weeks, both of whom had also cared for us earlier in the pregnancy. That was so important to us.

Freya's funeral was a celebration of her life, people were so incredibly kind, but that overwhelming pain of being without her came back and this time we knew it would never go ever again. Facing life without her tears us apart and we do not know how to even begin to face the time ahead just yet. Our only consolation is knowing that together we can help raise awareness so that perhaps someone else wont have to endure what we have gone through. We brought our precious baby home not in a car seat, but in a funeral car. Her only night at home with us, in her painstakingly prepared room and cot, was in her little white coffin. Our beautiful daughter Freya Lilian Marie Cheffings weighed 7.059lb and was 48cm long xxxxxxx

That is our story....Freya died and was so cruely taken from us due to undiagnosed Vasa Praevia, not to any of the risks we had been told about or feared, Freya beat all the the odds against her but was struck by a totally unrelated heartbreaking condition. No one knew about our Vasa Praevia until it was too late. Sadly like so many other families affected by this horrendous condition we have found some very well inform proffessionals but that many medical proffessionals havent even heard of it or some that only remember it as something incredibly rare from a text book that you couldnt do anything about anyway. 

We now know its possible this tragedy can be prevented and it isnt as rare as you think. Vasa Praevia affects 1 in 2,500 pregnancies and 1 in 300 IVF pregnancies. Therefore greater awareness is a must!

Risk groups for VP include; painless bleeding in pregnancy, low lying placenta/placenta praevia, IVF/twin/multiple pregnancy, history of uterine surgery, previous c sect/ D&C, velamentous insertion of the umbilical cord, bilobed or succenturiate lobed placenta.

Vasa Praevia (sometimes nicknamed the baby living with a timebomb in the womb) occurs when one or more of the baby's blood vessels cross the entrance to the birth canal beneath the baby. In late pregnancy as the baby drops down into the pelvis these foetal vessels can become compressed which in turn can reduce the baby's blood supply and cause oxygen deprivation. Even worse (as was our case) with the onset of labour (when your waters break) these vessels can tear causing rapid faetal haemorrhage. In other words there is nothing at all wrong with the baby, it is labour and rupture that is catastrophic.

It is believed that there are approx 555 cases of VP every year in the UK alone. Tragically in up to 95% of cases not diagnosed before birth these otherwise healthy full term babies will die at birth. Knowing that a simple colour doppler scan in pregnancy which takes just a few minutes could have saved our precious daughter's life is heartbreaking, as is hearing of all the other VP angels. Thankfully there are more and more VP survivors due to increasing awareness. When Vasa Praevia is diagnosed prenatally and a management plan is observed (earlier planned c section), the survival rate for infants is 100%!!! 

Please please help us to raise awareness of this life destroying condition in order that other little lives can be saved. You only need to see/hear of all the VP miracles to know raising awareness really does make a difference and saves lives! We do not want to scare anyone (remember this is still rare, 1 in 300 IVF pregnancies) we simply want to raise awareness so that any concerns or suspicions of VP can be checked out and/or patients reffered for screening. We now know that there are sadly many many families like ourselves who are in the risk groups but are never told about the risks of or reffered for screening for VP.

We wish we'd had this knowledge sooner.....had we known we were in more than one of the risk groups and had some of the symptoms of suspicion we would have asked for screening, it takes just a few minutes to rule out..... Now we wont be celebrating Christmas 2011 at home with our little girl after all. All her special little outfits so carefully chosen will remain hanging in her wardrobe and her xmas stocking hanging in her room.

The RCOG published a green top paper in Jan 2011 which includes Vasa Praevia and screening for women in risk groups. The NHS website also states where a placenta previa in earlier pregnancy occurs the risk of VP must be eliminated. Sadly many of the women in high risk groups like myself still dont get screened. UK VPRA believe these guidelines do not go far enough and are pushing for routine screening for all women not just those in risk groups as VP can occur without any symptoms. 

Please see UK Vasa Praevia raising awareness (www.vasapraevia.co.uk) or IVPF websites for more information about VP and remember pass this information on to all your family & friends. Information is knowledge and knowledge saves lives! Vasa Praevia raising awareness also have a facebook page - why dont you join today and show your support.

We cherish every single second we shared with our beautiful daughter and she will live on in our hearts forever, we will always be a family. Thank you for your support in raising awareness of Vasa Praevia in memory of Freya xxx PLease click on Freyas team page at the bottom of this page to see what else we are doing to raise awareness and funds in her memory - we have a team target of £5,000!!! can you help?? by donating money or joining the team? x or visit our store http://www.zazzle.co.uk/cheffings thank you