Saturday, 25 August 2012

Clara: Déjà vu & Motivation

So for the second year in row, I returned to school after the Summer holidays when I should have been starting maternity leave. It's harsh. By now, it feels like everyone at school has forgotten. The significance of the new term for me is lost on others. I struggle again to get past the feelings of 'I shouldn't be here', especially when a day doesn't go so well.

On a positive note, I think the return to a routine is good for me. A chance to get back into a routine of work, healthy eating and exercise. I had such good intentions about this a few weeks ago. I joined slimming world and starting exercising on the cross trainer every day. That seems to have gone out of the window recently.

I have been feeling pretty down. So many new babies have joined the fold since the girls were born. I have held two tiny new born girls in the past fortnight. I loved these cuddles with these beautiful, perfect, healthy baby girls but oh it hurts my heart. I want to be holding my own girls. To look into their eyes, count their tiny fingers and toes, hear them gurgling, watch them kicking away on their playmat. It's just never going to happen. All I have are 'still' memories and I treasure those so much. But holding those little blessings makes me want to continue to strive and not lose hope. I think sometimes I am tormenting myself but it reminds me that these little people are worth fighting for.

However, in all honesty, it gets me down and consequently my willpower is zero. I comfort eat and then I feel even worse. It's a vicious cycle. I need to focus and get as healthy as I possibly can. This will help me feel better in myself and that can only be a good thing.

A friend told me about a 'wall of motivation' that she was going to try, something she learned about from an athletic friend who competed in the Olympics.

So I am going to do my own 'wall of motivation'. This will include the following: photos of me at a 'happy' weight (not a skinnymalink by any means but a time where I felt comfortable), memories of my girls, a challenge board for the cross trainer with little achievable goals, a photo of me holding a baby (my ultimate dream plus I think it suits me!), wedding photos and family/friend photos - to remind me of all the blessings I have in my life.

To finish off on a positive, I will be adding this blog space to my motivation wall. It has been a privilige to work on this with Nicole and Gemma. Since going 'live' a couple of weeks ago, we have had well over 3000 views. We have had great feedback and it has been a good project to be able to do something positive with two fantastic and inspiring silent Mums. Another thing for the wall of motivation - to remind myself of the new friends I have made on this journey and that I can still put myself out there and do something to try and help others.

Friday, 17 August 2012

Clara: August 19th Day of Hope

I just wanted to share an event that I took part in last year and will be again this year. It is set up by CarlyMarie Project Heal. She is the lady who writes the names of children on the beach in Australia in memory of her son Christian. I know that many bereaved parents have had their children's names written there.

Sunday August 19th 2012 marks the 4th anniversary of the founding of Christian’s Beach. Since that day  over 15,700 babies and children have been remembered here, including my girls.

August 19th is about honouring and remembering the lives of babies and children that could not stay with us. By doing this we are speaking out about the death of babies and children.

It is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened. These babies that die are not sad things that happen. They are people, much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters.

August 19th is about openly speaking about these children and celebrating their short lives.

You can find out more above the event here and if you would like to show your support to this day, you can use one of the awareness images that can be found on CarlyMarie's Facebook page. I have used the picture below as my profile picture on Facebook. My family are also going to put the relevant pictures on their Facebook pages on Sunday.

Thursday, 16 August 2012

Nicole: To my boy on his birthday

My lovely boy.  So today is your birthday.  It’s been a year since you came silently into the world, a year since I last saw your face.  The last year has been the worst of my life.  Learning to live without you has been the hardest thing I’ve ever had to do, and I feel the lack of you in everything I do.  You were with me for such a short time, but the impact of your brief life on mine has been huge. It’s left a crater in my heart, and an impression on my soul bigger than I could ever have imagined.  Yesterday it was a year since we lost you, and it was particularly hard – I miss you so much.  But I’ve talked a lot about my grief, so today, on your birthday, I want to talk about what you’ve brought me.  On a day I should be giving you gifts, I want to thank you for what you’ve given me.  
You have taught me so much.  I have changed in so many ways, yet in others losing you has restored me to who I really am.  You returned my natural optimism - gave me hope when I had started to think I’d never feel hope again.  You made me realise that giving up, out of fatigue and out of fear, is not an option for me.  You made me see the good in people – the overwhelming good in humanity as a whole, when time and experience had started to make me cynical.  Because of you I have found my voice again.  I used to write all the time, but I had stopped.  Writing to you, and about you, makes me feel like myself again. 
Through you I’ve met some of the most amazing women I’ve ever had the fortune of knowing.  We have been brought together by our loss, and united by our thoughts, feelings and care for one another. I’ve been able to get and give support like never before in my life.  I wouldn’t have met them, wouldn’t have been there, if it weren’t for you.
Our Year of New Things, which we’re doing in your name, has shown me that there are amazing experiences to be had, if you let yourself try things.  That it’s not worth putting things off – for when’s a better time to enjoy things than now?  We are inviting people to join in this week, and I love the thought that people will experience something new, all because you existed. 
You have confirmed the love that your dad and I have for one another.  We never doubted it, but losing a child can break a couple.  Not us.  We are more together than we ever were, if that’s possible.  You’ve also made me realise how important my lovely family and wonderful friends are – for what matters in life if not them?  People might think that losing a child would make you scared to love, to open your heart.  But I know the hard way that love is worth the risk of loss.  The grief doesn’t cancel out my love for you – I only feel so much grief because I feel so much love.  And I wouldn’t change having you for the world.     
I read somewhere that perhaps people get the time they need to achieve something  in this life.  Looking at the impact you had, the effect you’ve had on me, on your dad, people who know us and even people we've never met, perhaps those 9 months in my tummy were all you needed.  That your life was short, but perfect and complete.  
Of course, I miss you more than I can express, especially today on your birthday.  I wish we had presents, and spoiling you, and fun.  This day each year will always be your day, but it won’t be the only day that you exist for me, that I remember you.  Every day you will be in my thoughts, every day I will wish you were with me.  I struggle with not being able to hold you, to care for you.  I have all this love for you that I can’t do anything with.  So I will send it out into the universe, in the hope it finds you.  Can you feel it?  Does it reach you?  Happy birthday sweetheart, and thank you  xxx  

Tuesday, 14 August 2012

Jim: A year on

This was originally written in response to Jason Manford's replies to the awful comments posted about Gary Barlow's daughter, who was stillborn recently.  Jim then asked his wife Nicole to include it on this blog, to give a father's perspective on loss.

It is a year on Thursday since we lost our son Xander . It was the worst day of my life. Arriving in the hospital full of hope and excitement -and totally shit scared- to be told (after far too many scans for there to be any other news) that our son that we have been waiting for, for what was the happiest most exciting nine months, had died. The world just stops there is nothing , this is wrong.  As the father I then had to watch my wife go through 24 hours of hell, watching her in so much pain and feeling so helpless knowing that at the end there is no bouncing bundle of joy. There is nothing, just an emptiness.  We should be carrying home (in our new car seat) Xander dressed in the lovely robot baby grow but no. We go home to an empty house that now feels even emptier than before because there is, and always will be, a Xander-shaped hole.  

So you get on with stuff, trying to be normal, knowing there is no normal now, it is all just a front.  So you go on, in my case making myself ill, but going on.  We have had a strange year filled with some mind-blowingly sad times but with some happy times too.  Trying to keep positive, setting ourselves a target to do new things in memory of our beautiful baby but knowing despite the lovely walk, on a lovely day, with the most wonderful wife in the world, we are missing something.  It is not just a walk in the park - it is a walk in the park without Xander and will always be.  In memory of Xander please try something new this week #forXander   

Lynsey: Lilly Berwick's Story

Lilly was my third pregnancy.  I have a daughter Hannah who is eight years old and a son Liam who is five.

We found out I was pregnant in September 2010 and everything seemed to be going fine.  We had the 12 week scan on the 21st of December, an early Christmas surprise!  Again, everything was fine which was such a relief, as I’d had a fall, in the heavy snow we had in November.

On the 18th of January, I had a Midwife appointment as that was me at my 16 week milestone.  I was really looking forward to hearing the heartbeat!  My mum came with me, along with my son.  The Midwife took my obs which were fine, then felt my fundus (the part of my uterus that could be palpated abdominally) but was having trouble getting a proper trace.  She just said it was very faint, so she wanted me to go to the hospital to be on the safe side.  At this point most people would be worried, but this happened with my eldest daughter so I assumed everything would be fine.

When we arrived, I was taken into a treatment room.  They put me on a monitor to check my pulse.  The Midwife wasn’t happy, so she sent us down to the scan room for further checks.  At that point, I knew something was wrong.  I told my mum to get hold of my husband.

He met us down at reception and my mum went to pick up my daughter from school.  We were sitting in the waiting room and my heart sank when they called my name.  At first, I refused to go in.  Looking back, I realise I knew something was wrong and I just didn’t want it confirmed as then it would make it painfully real.  The lady we saw, asked for my details and keyed them in.  The screen came up and we saw the baby.  She measured the baby at this point and asked “how many weeks did you say you were”? “Sixteen” I replied, at which point my husband squeezed my hand (he was watching the screen from a different angle).  She turned the monitor round and then turned up the volume.  Then she said the dreadful words “I am so sorry sweetheart”.  I remember screaming from the roof tops and sobbing, sobbing to the point where there were no tears left for me to cry.  She had to have it confirmed by another lady, which just prolonged the agony, as part of me was hoping I would hear a heartbeat.

We were taken into the family room to be told by the consultant that I would need to give birth to the baby.  Both my husband and I were not happy about this, as I had had my eldest daughter by emergency C-section and my son by a planned section.  The thought of going through a natural birth in such very sad circumstances, was something I dreaded.  The consultant looked up from her notes and said to us “I understand, but you need your womb to be empty”.  I wanted to slap her, how dare she?  The Midwife came back with a tablet and told me to come back on the Friday morning the 21st January, at 10am.

The Wednesday and Thursday were two unbearably long days but having said that, I can’t really remember anything about them.  My mum came with me on the Friday, as my husband couldn’t manage.  We were shown into a side room and the Midwife introduced herself.  She was really lovely.  She was shocked and angry that nobody had given us any information on the options available to us with regard to the baby burial or cremation.  This added to an already terribly difficult time as I then had to phone my husband to discuss our options.  The tablets were given to me around 11am and our daughter, who we named Lilly, was born at 2.30pm.  She was completely perfect.  I spent a couple of hours with her, giving her lots of kisses and cuddles.  The hospital took some photos.  I don’t think I would have coped with any part of this painful experience without my mum being there.  It was so special to be able to share and have those special moments with my mum and her granddaughter.  I was discharged at 8pm.

I will never forget seeing my husband’s face when I came home and while showing him the pictures he said “Just perfect”.  I hated leaving Lilly, but kept cuddling the SiMBA blanket to bring me some comfort.

She was laid to rest on the 8th of February at Loaninghill Cemetery.  I think having the service and seeing my husband carry the coffin made it all the more real and brought so many more feelings to the surface.  It was so lovely to share that day with close friends and family who were and always have been a massive support to us both.

The post-mortem took 16 weeks to come back and the results showed my baby was a girl and the cord was round her neck twice.  That was the only indication as to what had caused her death.

In January 2011, in the run up to Lilly’s first anniversary, I joined the SANDS West Lothian group after my friend Heather, who was always there for me with a shoulder to cry on when I needed it, found the group in the local newspaper.  My husband has been my rock through all this and I don’t know where I would be without him.  The shared sad loss of our daughter has brought us closer and made us even stronger.  He gave me a lot of encouragement to attend the meeting.  It was the best thing I ever did and I did it at just the right time.  When I first went and heard the other parents stories, I thought my loss was only at 16 weeks whereas all theirs were further on but the team at SANDS completely reassured me that it was fine and since then the meetings and the help I have got though SANDS have brought me a lot of comfort and support.

I was amazed at how many people were there and they had all lost a baby too and understood how I was feeling.  They know exactly what to say at the right time, when you need it the most.  This was such a comfort as often family and friends try to say the right thing but can unwittingly make things worse.  The ladies at the meeting  and myself all share something in common and a title “Angel Mummies”  I have formed friendships with these fantastic ladies that will last a lifetime and I can’t thank SANDS Lothians enough.

Thursday, 9 August 2012

Going Live!

Just a wee blog post to let everyone know the blog is going live and fully public on Monday 13th August.

Thanks to all who have commented and submitted posts so far. We have had a great response to the blog and we hope it continues.

Clara, Gemma & Nicole :)

Saturday, 4 August 2012

Nicole: Letter to my boy a year after his due date

My beautiful boy.  A year ago today was your due date.  Your dad and I were so happy - with both of us off work and me still feeling mobile enough for us to get out and do things.  We stopped in town for a coffee, and the woman who served us was pregnant too.  She was so excited when I told her it was my due date, making jokes about preparing towels and hot water.  You moved about so much that day - you were so wriggly and made your dad and I laugh with the weird shapes you made in my tummy.  I knew you weren't on your way just yet, I'd had no contractions, though you were headed in the right direction. 

When we first lost you, I couldn't think back to that time without bitterness, without thinking how stupid I was to have thought we were going to keep you. I found it impossible to remember those days and feel happy.  I'm so sorry for that.  Now, I think back to this time last year and yes, I am sad.  The day is tinged with grief, because I'm looking at it through death-tinted glasses.  But I also remember, quite clearly, how it was to feel you move.  How excited we both were, how complete and happy I felt, how I was brimming over with love for you all of the time.  I don't feel any of those emotions anymore, except the latter.  I feel love for you, all of the time.  I ache for you, I miss you, and I love you. 

I really wish you'd arrived that day, or sometime in the following week, because chances are we'd still have you now if you had.  But that isn't what happened, and to wish it makes me feel like I'm denying who you were, and what you mean to me.  I have those perfect, wonderful memories from before 15th August, and I'm so grateful for the time you gave us.  I've never experienced grief like it, but then I've never experienced love like it either.  Thank you sweetheart, for everything.  With love, always, mum xxx

Thursday, 2 August 2012

Gemma: My Infertility reality

There is no such thing as infertility in a woman that has successfully conceived and carried a child I have been told; this is something that I have clung to throughout the last year as I have been unable to conceive a rainbow baby.

Today after a year and 13 days I have a diagnosis; an explanation as to why my monthly cycles have all but vanished. I have a microprolactinoma; in fact I have two.

What does this mean? It means that I have two small tumours sitting on my pituitary gland; tumours - Christ that's a scary thought when I read it back and yet I was never scared about the possibility more I was scared that I would have something that would prevent me getting pregnant again. Two small benign tumours I'll take gladly; these two tumours I have called Bert and Ernie - it makes them comical characters in my life rather than two tumours that could possibly prevent me ever conceiving again without medication.

I wanted to share this on here because it has only been my determination and certainty that something wasn't right with my body that I have got as far as I have with the doctors; Claire's blog regarding her serious and rare condition prompted me to want to write this so that other women may recognise the signs of a prolactinoma and get it treated quicker than I did; it isn't as serious or heartbreaking as that but it prevents pregnancy and affects fertility and I think its important that it is recognised and women have someone who has been there and who understands. I also want women to believe in themselves - if you are certain and confident that something is wrong and you know your body better than anyone then don't let the doctors tell you it is stress; that you are imagining it; be firm and don't give up.

My periods never really came back after I had Isaac, this was not how my body works. My period has come every 28 days since I was 13; without fail. I have lost my best friend when he drowned, I lost my grandparents to cancer, I suffered a breakdown due to serious depression, my marriage broke down and I left for a while, lost my pride and joy when my horse died and throughout it all, regular as clockwork my period arrived; come rain or shine every 28 days.

I believed the doctors at first when they told me the absence or irregularities were down to stress - emotional and also the stress my body went through giving birth; after all I've never given birth before how would I know otherwise? Each month that my period failed to arrive I became more down and yet my stress levels after the loss of Isaac started to level out - I was coming to terms with my grief and becoming more stable and yet if anything my periods became more bizarre.

We suspected poly cystic ovaries and I may in fact have this also although my consultant now doubts this; but it was weekly Dr's appointments as I pushed and pushed the doctors and yet still in my heart I knew there was more to it. My milk had come in after having Isaac and have leaked slightly ever since - I found this upsetting, a constant reminder that I was never able to feed my child and yet this was another sign something wasn't right.

A prolactinoma is a benign tumour (non-cancerous swelling) in the pituitary gland. Prolactinomas make large amounts of a hormone called prolactin. A prolactinoma occurs when some of the cells in the pituitary gland (the ones producing prolactin) multiply more than usual - they can appear quite spontaneously and from the research I have been able to do they can happen after pregnancy which raises the prolactin levels. About 1 in 10,000 people develop a prolactinoma so they are fairly rare, completely non life threatening I'm not sure that I would have even bothered to push had I not been trying to conceive. My symptoms were obviously the irregular periods, the leaking breasts (called galactorrhoea) but also I had additional hair growth on my face and body - I understand you may also experience a reduced sex drive as a symptom.

There can be more serious effects and symptoms and I would recommend that if you have any concerns you go straight to your doctor and ask them to run tests. I had a simple blood sample to check the level of prolactin in my blood, the normal level of prolactin is less than 400 mU/l. A very high prolactin level (>5000 mU/l) usually means that a prolactinoma is present. Levels in between may be due to a prolactinoma, or to other causes. My levels were not excessively high around 600mU/l and were missed initially by my Dr or at least discounted. Had they picked it up I would be months further along but hey I'm there now!

This was followed up by a referral to an endocrinologist who sent me for a CT scan and finally I have a diagnosis.

They will always be there; they may get worse and grow with a pregnancy but it means that with medication my chances of my fertility returning are high. Now I just have to work with the consultant to find the right levels to get my cycles back. I'm impatient for this to happen so I can move forwards and get that positive pregnancy test as soon as possible. I feel frustrated that it has taken this long to get here and I wish I'd had more faith in myself earlier, but its difficult to be too negative after all I was grief stricken and heart broken; who has the presence of mind to analyse their periods after such an experience?

Wednesday, 1 August 2012

Fliss: Incompatible with Life

Our daughter had Trisomy 18 (Edwards Syndrome) and when told the diagnosis we were also told the words 'incompatible with life', despite medical assumptions we carried on with the pregnancy to give our daughter every chance we could.  It was worth it.  I wrote this shortly after she passed away...

Do not tell me my daughter is incompatible with life.

To be 'incompatible with life' you would not be able to exist - ever. But to make it through conception, growth, the development of a heart, lungs, liver, brain and all the other aspects that create a human being - which the name itself proves the existence of life - being - a human, being.

For 9 months our daughter grew inside me, she moved, she played, she slept, she grew stronger and stronger, she developed a personality, a soul.

The body she was given was destined to fail her and yet she continued to fight and she made it into the world to feel all the love that is here for her, from her mummy, her daddy, her brother and so so many more people, family, friends and others far and wide - to touch so many, make them stop and think, shed a tear for her, smile at how strong she is, be inspired by her - how many can say they have done that?

For 70 amazing hours our beautiful daughter fought on with the body she was given until she felt it was time to go, to leave it and spread her wings. But behind she leaves eternal love and pride from Mummy and Daddy and the impact of her strength and bravery on so many people.

Do not tell me my daughter is incompatible with life.

Julz: Letter to Melody

Melody was born at 26 weeks due to her mum Julz's severe pre-eclampsia. Julz would like to raise awareness that Pre-Eclampsia can happen before 28 weeks.

Dear Melody,

Today is the 1st August, which means it has been a whole 4 months 1 hour and 5 minutes since you fell asleep. How different things were this time last year. Me and Daddy had just decided we wanted to try to see if we could make you possible. It was a few weeks before our blessing, and a few weeks after our wedding. We thought how lovely it would be to have a post blessing baby; we never in our wildest dreams thought you would grace us with your presence, so early in every way! 25th August was the magic moment you came to our lives. I became sicker as the months went by, though I found it hard to bond with you, which I will forever hate myself for, I knew as soon as you would be born I would love you forever. And that moment came sooner than expected. I'd said over and over again I couldn't feel you move, hence the limited bonding, I was so scared for you. Until 26th February 2012 the doctors and nurses thought it would be safer if you you were delivered.

At 26+6 1346 you squeaked into the world, kicking the doctors as she pulled you out from the warmth that you were used to. They showed mummy and daddy your face and the love surged through us both. Neither of us were allowed to go with you, for me I had to be stitched, but they wanted daddy to stay with me. I felt I'd already let you down by now being able to go with you.

It wasn't for another 6 or so hours that I was able to see you, daddy had gone to see you and taken a picture. The love I felt a washed over me.

When I was finally wheeled to see you I felt absolutely scared, scared on how you would look, how you would feel and whether we would be able to keep you.

Though your tiny little face was covered with a ventilator, you really looked so, so beautiful. In fact one of my favourite photos of you is one of your earlier ones.

Within 24 hours you were off your vent onto cpap, then quickly moved to vaportherm, which you remained on. Receiving O2 through it, nothing fazing you, you were always so feisty. You knew when you needed your bottom changed, you hated everyone poking and prodding you, putting your hand up across you face, to tell us you had enough. You used to love Kangaroo care, even showed you wanted a breast, but you were still too young to be trying. Mummy and daddy cuddles were the best.

You also enjoyed having your big sister and brother to visit you. Listening out for their voices, giving them huge windy smiles, and grabbing your sister's finger. They love you very much.

You were doing so so well, we were told your brain function was fine, no signs of disability, you had a slight murmur but that also cleared, you really were our miniature hero, waiting for you to grow, waiting for the discharge day that we had been given, to take you home a week before your would have been due date, 15th May, we began making plans as a family of 5 for the half term holiday, so excited to get you home.

31st March me, daddy and your big brother came to visit you as your sister was going to a birthday party. The nurses let us have a cuddle with you, it was the first time your brother had seen you outside your incubator. You had such a beautiful colour about you. Your brother was talking to to you, could see your eyes looking out for his voice, though we knew you couldn't see him, we knew you were trying. We had a photo of the four of us, and told the nurses it would be just mummy and your sister visiting the next day, us three girls together. The nurses agreed to wait to do your cares so your sister would watch too. 1st April, daddy phoned in as he did every day, to see if you had a better night, we were told they were about to ventilate you, to give you a rest. I knew then we had to be with you, a sinking feeling within my heart. We dropped your brother and sister off to their own dad, in the hope we would collect them later and me and your sister would go down again later.

In the 10 minutes it took us to get ready and to take them to their dads, we had a phone call to say we were needed to be with you. I drove at speed to the hospital, hoping that they were going to transfer you to another hospital an hour away and that we were needed to sign forms for permission and collect your belongings.The unit doors were closed, I felt sick, your doctor greeted us to tell us that she was afraid you weren't going to survive!! Pardon? I can't repeat what I said.

I felt my legs buckling, but knew they had to carry me to you. Your bed had been moved back to the most intensive part of the unit. This in itself was bad as you had been in the bottom end of HDU. I begged them to tell us this was a horrible April fools joke, why were you fighting for your life? They had restarted your heart 5 times, we asked them to stop, to leave you alone. We wanted none of this but to have your vent taken away was the most terrifying awful thing we have ever gone through. They passed you to me but I only held you for a moment daddy took over while you were christened in no less them a minute long.

Your vent was removed. This was then I knew I had to have you, to hold and kiss you, keep you warm, beg you to stay. Wondering if you could hear mummy and daddy's pleas, our sobs saying the word we had been so scared to use for the past 5 weeks. I really hope and wish you had heard us tell you we love you.

930am you left us.

I held you for as long as I could, but then your colour began to fade rather quickly, we made the heartbreaking decision to hand you back to the nurses to bath you and get you dressed, now this guilt will stay with me forever, we should have bathed you, we should have stayed with you, I'll always wonder if you would have stayed if we had left the vent in. Should we have fought more for you?


What now? How do we possibly leave you? Leave you to be transferred somewhere cold. The days and weeks passed too quickly, the feeling of everyone forgetting you, people telling us to get over you? How are we ever going to do that?

As we approach your 6th month birthday, we wonder, would you have been crawling? What food would you have been pinching off our plates? Having to move things higher, or the sleepless nights through teething.

We miss you so so much. Life is so cruel. You were doing so well, we had so much hope that you would be home. To discover you had an infection similar to meningitis? Wondering if it should have been caught. Fed up with people telling me it's one of those things, or natures way. I just wish desperately that you are still here.

We love you so much, we will never ever forget you. You'll always be our daughter, baby number 3.

I just wish desperately that I could turn back time. To hear the words, "we made a mistake, Melody is in fact ok but she needed a rest" Why?

My heart aches, my arms feel heavy without you. Desperately clinging on to your scent.

Melody Caitlyn we will always always love you

Forever your Mummy


Clara: Massive Perivillous Fibrinoid Deposition

I wanted to write a short post about my horrid condition. It is so rare.

When you google it, various medical documents come up but there is no human face to it. Well, that's not strictly true as it is now mentioned on the Silent Love blog following my contact with the blog's author. That post now appears in the google search and it is my hope that once this blog goes live, anyone else searching for this may come across this post. Any pooling of information and resources is a step forward.

Massive Perivillous Fibrinoid Deposition (MPFD & sometimes referred to as Massive Perivillous Fibrin Deposition)… basically my placentas become clogged with blood clots and fibroids. These affect the function of the placenta and ultimately causes it to fail as it struggles to support my growing babies. There are different schools of thought. It could be due to an as-yet-undiagnosed blood-clotting condition or it could be due to an immune response. My bloods have consistently come back clear and we are of the belief that it is an immune response that causes this. My immune system is attacking my placentas causing the clots and fibroids to form and ultimately rendering my placenta useless. My girls fought hard but to no avail. My body let them down (despite being on aspirin and heparin when pregnant with Grace).

We are now pushing for a treatment plan that has worked for others with similar conditions. This involves aspirin, heparin, steroids and some sort of immune infusion therapy (IVIG or Intralipids, neither of which are available on the NHS). Our consultants have warned us that we are now sailing in unchartered waters. Time will tell.

If anyone comes across this post in the hunt for more information on MPFD, please feel free to contact me via the blog email address.

You can read more about my journey here Clara: My Story and here Clara: When Loss Keeps On Happening. This gives updates on our journey using the treatment plan we fought for which unfortunately did not work for us.

Gemma: Things to be grateful for

It is not easy in the aftermath of losing a child to be positive; in fact much of the time I found it hard to find anything to be positive about at all. Most of my waking moments were filled with sadness, anxiety and empty words rattling around in my head "My baby has died, Isaac had died".

I am a year on and I am conscious that I cannot sit in sadness forever; although that is something that would be easy to surrender too. To stop the exhausting battle and daily grind and simply sit down and say "No more, No more".

I have battled with anger throughout my grieving process, while my husband understands my on-going sadness I can see that friends and family start to tire of my constant referrals to Isaac; a friend brightly said to me the other day "you can’t be sad forever" and while I know she meant well, it was clear that she simply didn't understand the nature of my grief. I feel like speaking in much the same was British people do in a foreign country - loud and slow. "I'll be sad forever, son still dead, me still sad" in an effort to make people understand that this will never go away.

But in a way she is right; what she meant was I can't sit in my house waiting to feel better; waiting to get pregnant again and bring home a happy safe baby; it isn't healthy and it isn't fair to Isaac.

On Isaac's birthday I put a status up on Facebook and had the usual support from my friends and a lady commented that I must be special to have generated such support. I laughed when I read it; because I’m nothing special I'm just an ordinary person trying to get through as best I can.

When I think about it though; I may not think that I am anything special but people do. People care about me and love me; and my happiness is important to them and so I owe it to them, to try and find a way forwards. When I am sad Andy hates it and it visibly makes him sad too and I can see that it hurts my family and friends when I am low and so I owe it to them and to Isaac to try and sort through the sadness and find my spark again; it must still be there somewhere - It can’t have gone out completely.

Sometimes you need to stop focusing so completely on what you don't have and what you have lost and just take a few moments to look around and see what you do have. "I have nothing" doesn't wash with me because I do have so much to be grateful for.

Losing Isaac has been horrific but so far it has made Andy and I closer than ever, we are more open with each other, kinder to each other and more sensitive. We make more quality time for each other and take timeout to appreciate the things that made us fall in love with each other; and recognise the new qualities that life has added.

Our mutual loss has also meant that we will appreciate the children we go on to have all the more; we will be grateful for the sleepless nights, for the nappies that need changing. I am hopeful I will be a more patient mother and I know without a doubt Andy will be a more doting father (which I suspect will be very doting!)

Surely to the fact that we have experienced fertility problems will also make us better parents? More thankful and attentive, we will never take our children for granted and will always realise the gift that they are.

I have made through my loss some friends, here on this blog I have Nicole and Claire to bounce ideas off and concerns, I have found a closer and more suitable place to keep my horse for now and I have found a balance in myself that I was missing before; a stillness.

The one thing as a baby loss mother that I often forget to be grateful for is that I conceived him, I carried him. So many women will never know the joy of their baby growing inside of them, their first movements, the first time you hear their heartbeat or see them on your scan.

It is hard not to be pregnant and to be a mother without a living child; it upsets some baby loss mothers that I say this and yet it is for me an unavoidable fact. I am in theory a mother and yet to tick the box how many children in the household, to say I have no children to raise is hard, impossibly hard and yet recently I have had to step back and realise that this in itself may have been a blessing. I didn’t have to put on a brave face for my little person while I was grieving for a brother or a sister they had lost, I was able to fall down and not have to hide my sadness from my children.

Isaac was my first born child and as such his memory will live on and on forever, when I conceive and have my rainbow baby grow inside my belly I will know how it feels and be prepared. I will go through labour having done it before and I will watch my children grow and imagine Isaac running and growing alongside them; loving them better because he lived. I will get up to wipe away the tears and know Isaac never shed a single tear, never cut his knee and never had a bad dream.

Tomorrow I get my results back and I will understand what my chances of conceiving again are; I will have an expectation of when, not if I can expect to conceive my rainbow baby and I am hopeful it will be soon. I am so thankful that I had Isaac, to know that I can do this; I have done this before and I can do it again and give him a brother or sister. I know that as my family increases and grows that he will remain with us and guide us and mould us into better parents, and better people.