Tag Archives: Baby loss

Charity Awareness – PAIL Awareness

charity towards tomorrow logo

Pregnancy and Infant Loss Awareness Week

This week remembers and spreads awareness about the babies and children who have passed away. I have always been open and honest about my grief journey; my thoughts after Melody died. I don’t really need this single week to do so; however it gets people thinking, it gets people talking, it brings the taboo to the forefront of people’s minds. In the hope that one day the taboo will be a distant memory. We have a long way to go.

When we walked out of the hospital after Melody had died; it became apparent form very early on that the support as a whole for bereaved parents really is few and far between; even more so with Melody’s death. Leaflets, awareness, even charities concentrated on a few scenarios; which of course is amazing, the more awareness the more chances women and professionals will be able to reduce the rate of death. But it can leave parents like us feel alone, pushed out and even more isolated.


From the first few days I took to online support; but knew I wanted to help more; there’s so much more I want to do. I decided that I would like to try and get a group together. It was something I felt was missing. I ended up contacting Mel Scott of Towards Tomorrow Together, a charity who supports families who have lost a baby through miscarriage, stillbirth, babies with poor prognosis in utero and they included us. So essentially all losses, nobody gets excluded.

Little Daffodils was born; although it was originally named Melody’s Voices I came away from a prestigious baby loss event in 2016 – The Butterfly Awards and knew that giving support and making a difference was so much more than doing something in her name, and in her memory. Daffodils are the flowers for us who represent Melody but they give so much colour, but only live for a short time. I really want to make a difference; sometimes it can feel like I am hitting a brick wall; others when people message for support and then say thank you, I know something must be doing.

Towards Tomorrow Together provide Butterfly Boxes to hospitals to help families create memories in the short time after a baby or child has died. Unfortunately it isn’t something we personally received (back to the lack of support), but they do bring comfort to families who have to leave without their beloved children.


little daffodils logo


Through the death of her own baby, Mel has worked tirelessly to raise awareness, put together educational sessions – I have even spoken at one; and in the midst of putting one together myself, with the help of Mel.

It is difficult to get across to professionals the real thoughts and emotions behind losing a baby; through textbooks there should be a time limit. There isn’t.

This Somerset run charity works a lot from fundraising, this year Little Daffodils as a team has made £1900 with various fundraisers.

There is so much more to do within the baby loss community, especially for infant loss awareness; it will take more than a week out of a year to achieve it, but we do need to keep talking, keep listening most importantly to not let any parents – Mums and Dads feel alone and unsupported. Their – our babies mattered.

She wasn’t “just” a baby. She is ours; she was here for five weeks. She is Melody.




Neonatal loss awareness

Neonatal Loss Series – Marisa’s Story

12 Days – That Is All I Got

(By no means am I trying to discredit miscarriages or stillbirths.)

My loss matters too.

My son was not a miscarriage.

My son was not a stillbirth.

My son was a neonatal death.

My son lived for 12 days.

My son died in my arms.

My son should be here.

My son is gone due to medical error. I can’t believe I finally said it and wrote it.

Medical error.

Here is his story. Here is how my son became a statistic for neonatal death.


The year – 2010.

The emotions/ feelings – joy, happiness, love.

We were expecting our first child. A boy. A son we named Drake.

We did everything first time parents do; we enjoyed every moment of the pregnancy, we imagined which one of us he would look like, we had baby showers, we painted his room, we decorated his room, we went to every appointment together with our group of doctors, we told the doctors any concerns we had (such as my high pain tolerance and the chance of having fast labor – family history), we looked forward to seeing our son, holding our son, loving our son.

At 38 weeks pregnant that all that changed. At 38 weeks, I went in for my normal weekly appointment. At 38 weeks, we found out our son was in the Frank Breech position. At 38 weeks, I was scheduled for my C-section for 4 days before my due date. At 38 weeks I still trusted my group of doctors.

At 39 weeks, 2 days – I went into labor at home in the early morning hours. We timed my contractions for 20 minutes and upon realizing they were less than 5 minutes apart, we called the doctor’s office and spoke with the nurse who said she would have the doctor call me (the same doctor on-call was the one who was to be doing my C-section in 2 days’ time).

My biggest mistake.

The doctor called, listened to what we said and decided that we should continue to monitor my contractions for another hour. Well as new parents, we listened. The biggest mistake ever because you see – 45 minutes into that hour my water broke and my son’s feet came out. (During this time, we called the nurse to have the doctor call us and we never got a return call until several hours later.)

Naturally once his feet came out, our next call was to 911, by the time they arrived my contractions (with no help from me) had pushed him out to his ribcage. The EMTs decided to try and help us finish delivering him on our bathroom floor – so we got the rest of his chest and his shoulders out. We could not get my son’s head out, so we were loaded on a gurney with his head still inside and taken to the hospital where with the ER doctor we finally got my son’s head out – but by now he was no longer breathing.

One of the EMTs was able to resuscitate him long enough to be placed on a ventilator.

Neonatal Unit

Within a couple of hours, he was transported to another hospital where there was a NICU. I had to stay at the hospital I was at, they finally released me after 15 hours and we made the 45-minute trip to see him.

You know your son is truly hurt when you walk into your son’s NICU room, surrounded by other babies, and the night head nurse tells you:

“Out of all the babies here in the NICU, your son is the worst one.”

Drake spent the next 12 days in that room. I could go on about the tests he had, the meetings with doctors we had, the talks with the nurses, the meeting with a local organ donation company (my husband and I are organ donations and we wanted information in case Drake did not make it).

No matter the tests, the meetings, the discussion – the tears, the anger, the silent screams; the end result would never change.

You see our son was



The lack of oxygen he endured while he was stuck inside me caused brain damage, he would never breathe on his own, the doctors gave us 2 options:

  • Allow him to stay on the ventilator and allow his body to deteriorate and die.
  • Pull him off life support and allow him to die in our arms surrounded by love.

My husband and I talked for many hours – we made our decision out of love. Love for our son. We had no idea what pain he may have been experiencing.

We chose to say goodbye, to allow him to go, to relieve him of pain.

At 12 days, 12 hours old, we pulled Drake from life support. He lived another 4 hours before he finally passed away in my arms.

This was 7 years ago and I think about him every day.


Thank you to Marisa of Life by the Dreams for sharing Drake’s story.


Baby Drake

Capture Your Grief

For The First Time – Capture Your Grief

first time. the letter M


Today is the first time I have lived the 7th October 2017. I have never lived this day before. I won’t be trying anything in particularly new today. It is an ordinary day for us. The children are displaying in a carnival and we’re on a constant time watch to be ready to go. Things to get ready, helping to get 30 children ready today. So for me to physically go and try something new today would not happen.

I woke up this morning after a lovely evening out for the first time in what seems like ages, I laughed and felt on top of the world. I went to see a show, I never thought I would ever go and see. It was hilarious. Of an adult content, but it was so funny.

The first time I saw Melody I was strapped to the bed, wires and leads every where, she had been taken out via c-section, there was this giant green screen dividing my head from the working end. The room was hot, it made me feel faint, there were people everywhere, there wasn’t space to move in the room or add any more people. We could tell the operation had begin because the room had fallen silent. I remember begging the midwife stood next to me to tell me that she was alive.

“Is she sleeping? Has she been born sleeping?”

The midwife would take a second, which felt like hours to peer, I knew she was concentrating, but I needed to know. Her heartbeat was on the CTG moments before, but we knew she was fighting.

As I asked one more time, a squeak came. It was loud enough to fill the deafening silence; it was loud enough to be heard to fill my heart with love.

“No she hasn’t been birn sleeping.” The midwife said to us in her really soft voice; the Dr deliviering her confirmed so when she said the Melody had given her a kick as they lifted her out.

For the first time in days I felt relieved that she was born. That she had been born alive; we had no idea on how long we’d keep her, being a micro premature baby; nobody knew how well she would do.

The Doctors brought her to me, I could see her tiny pink face, she really was that tiny. 9inches of her…23cm.

The first time I saw her, I had no idea whether it would be the last time I saw her alive. I had to cherish it; I have had to keep that safe. She wasn’t meant to die.


Carly Marie Capture Your Grief

Day Six

Melody and Me.

Capture Your Grief

Belonging – Capture Your Grief 2017



I never really felt like I belong anywhere; at least not until I met my husband and our family life became as complete as it’ll ever be.

There were friendships in school, but they weren’t always what they seemed; I have always found it particularly hard to make and then keep friends. I am shy;  sometimes people mistake that for rudeness; but I try not to be. With this in mind it has caused low confidence-low self-esteem. I really shouldn’t let this define me, but I do.

When Melody died we were faced with people crossing the street, people telling us they didn’t know what to say; family being unsupportive; it leaves you stranded and alone.



Truth be told I wasn’t alone, I wasn’t the only one to have lost a baby, and I began to find other lost souls. Mums and Dads who were broken. They weren’t by my side but they were there, to listen, I could listen we could understand a little of what each of us were going through.

The online community became my safe place, my saviour I guess. It allowed me to be free; it allowed me to speak without judgement, the empty pities and with some understanding of what was going through my mind.

There have been things I have spoken about over these past few years, which I could never say to people outside of this community. I guess it is because just sometimes the things which leave my mouth can be so raw, that to anyone else, I could be seen as being crazy. But I am not.


As well as this community, I am grateful to the people who have stuck around every step of the way, and even more so to the people I have met since she died, these people have listened or read about our story, yet they choose to stick around and be my friends. There aren’t many of them, but I value them. If it is yacking on a Friday night, or a trip to the park or shops, I am eternally grateful to them.


It is a lifelong thing, she’ll always be my baby; and I guess I will always grieve. But to have the few who remind me to keep going are really worth their weights in gold.


Thank you



Capture Your Grief

Capture Your Grief 2017 – Meaningful Mantra


Finding my Mantra. I haven’t been well mentally recently, life has felt quite overwhelming. I end up being in tears, and there hasn’t been a week recently where I have seen it through without a tear or two.

Not because of Melody, but because there have been times where I feel that I am failing everyone around me, making me feel less about myself. I want to achieve so much; I wanted to pay an interest in my children’s activities, so I became a committee member. The need to help people and raise awareness in memory of our daughter to make sure other people felt supported and less alone like we did.

As I fail to take care of myself I end up letting people upset me, in ridiculous ways, ways where I wanted to leave the job I have fallen in love with. Walk away from volunteering with the children’s activities, to the point of crying and not wanting to leave the house.


Then it takes me to get to this point and question; how can I get upset by these insignificant people, when I have managed to carry on breathing after our daughter died? That is what they are to me they’re insignificant; yet I still let them get to me. I have made mistakes in the past, and I am only human but I deserve to be happy and loved too. I certainly don’t deserve to be hurt the way people think it is acceptable to do so.


So, I need to choose to not give up. To take better care of me emotionally, step away from these people, but it is hard. I don’t want to change who I am and become rude or nasty; I swear a lot but I am not a fan of confrontation; but I do need to stop letting them make me feel this way, because let’s face it if they thought twice about how much they upset people they’d not do it. Much more about them than me.

My Meaningful Mantra

So, I guess my Mantra should be to breathe for me. Not to waste any more tears on anyone who doesn’t deserve them. Most definitely DO NOT GIVE UP


meaningful Mantra. Keep going

Keep Going.

Melody and Me.

Capture Your Grief

Capture Your Grief 2017 – Rise And Shine Rituals

Rise and Shine Mourning Ritual.

Living with grief. All I ever wanted to do was to live; I wanted to be able to be free to grieve the way I felt comfortable with, to be allowed to talk about this little girl who lived.

I threw myself into needing to help others, I needed to give the support which we lacked, to make sure no one else felt as alone as we did, it was fairly high in my priorities to do this.

But I think my most important ritual was to keep living, to do more things with the children; to allow them to grieve and share their feelings about the death of their sister. As much as my head wanted to stay in bed for days on end, my heart wanted to keep beating to get me out of bed and live for Melody. She had died her heart had stopped beating; I would have to try and find a way of carrying her in mine.

It has been a difficult process; I have never believed she is with me all of the time, or that she is flying around having fun. I watched as they lowered her in to the ground, no amount of fairy tales for me can ever change that. At least it is like that for the children.



I know now five years six months and one day in, that I do need to take care of myself, I do need to work on my grief. I worried too much about how others were feeling, about protecting their feelings; my early mourning was taken away, I watched as friends needed to have help because THEY couldn’t cope with her death, how family were tired of receiving cards and sympathy messages about the loss of OUR daughter.

The person that I am tried to help mend hearts that were broken, I needed to be strong; I always thought if I was strong then the people around me would know that it is okay to now be okay.

I cried, of course I cried, but I apologised for it too; maybe that is the “British Way”. Who knows?

But I do know that the grief I have for Melody is an incredible learning curve; yet no matter what I do, or how I behave there is no right or wrong answer.

This month I will be a little mindful of myself; adopt new rituals which will help me and my little family.


Today, my regular ritual is keeping my heart beating; making the best memories I can for my beautiful children.


Melody and Me


Day One

Capture Your Grief 2017 – Sunrise

Capture Your Grief



Capture Your Grief Project 2017 By Carly Marie


Here we are again, with this annual Capture your grief project; once which I first joined back in 2012.

A project which helps bring the taboo of baby loss to the front of people’s minds, how many of us are effected by the loss of a baby or child.

My project is in memory of Melody, but I will also be mentioning my pregnancy losses too.


There isn’t much of a pretty Sunrise where I am today; there rarely ever is. It is grey and miserable looking out there.

The day she was born, back in February 2012 the sun shone, it was a beautiful spring day from what I could see from my bed. From that day onwards the sun remained until not long after her death; once her “celebration” had finished it rained for pretty much days afterwards.

When we spent days in the town in which her hospital was, we’d walk to the shops I would get sun burnt in March, I was wearing vest tops and flip flops. It seemed bizarre that we had this glorious weather so early on in the year.



We have had 2009 sunrises without her, 2009 days where we haven’t kissed her warm face, touched her warm skin, given her a cuddle. Seeing it written down as days, it seems such a long time ago; today it is five years and six months since we walked into the hospital and left different people, yet we hadn’t had surgery or an accident. We had watched our daughter die.



Nothing was going to be the same again. Though we didn’t expect how different we would be, how different people would be too. Meeting new friends, losing old friends, this tiny five week old baby had changed everything.


Capture Your Grief Sunrise


Melody and Me


Capture Your Grief 2017.

The Butterfly Awards, a shortlisting.

For the second year running I have been nominated and shortlisted for a Butterfly Award.

The Butterfly Awards are a prestigious evening to celebrate the work which individuals and groups do to support families of babies and infants who died.

I have been shortlisted in the blogger category.

It is strange to want to try and win such an award, because really it isn’t about winning this item, because my baby died; but for me it is to get her recognised as a person. To get her story told.


During our time we hit many things, Hyperemesis, Antenatal Depression, Early Pre-Eclampsia, HELLP syndrome, premature birth, IUGR,  life in the NICU, her death the Sepsis, the protocols in which should have been in place, which weren’t All of these things I can raise awareness for.

So for me it isn’t the award itself, by her name coming to the surface, Neonatal Death and Post Neonatal death getting a mention.  My work as an author and her Mum; I can bring awareness to these things. To help support others going through any of the above and of course the loss of their precious babies.

Please find The Butterfly Awards section on my blog, to take a look at my profile and video.

Thank you

Melody’s Life mattered. She was here; she lived. She just couldn’t stay.

Melody and me logo, which is a heart with an adult and child hand,

A Line of school shoes, with an obvious gap.

A Missing Future, An Empty Shoe Box

Back to school

As the whole nation prepares for the return to school, including myself. There remains the large hole of a missing child.

Helping Melody’s little sister get ready for her new adventures in big school; the preparation of shoes, and uniform; making sure book bags and P.E bags are ready.


When we missed reception in 2016, I thought it would have been one of the last big milestones. But it isn’t, not really. It is never going to be about losing “just” a baby. You lose not only yourself, but a future, dreams. There’s a personality missing, a child whose name will never get called in a register, a child who is never spoke of by another child, or wanting them to come to play. These children who stand in the playground, who sit in the classroom, will never know that there is a girl who should have been there. A girl who should have been friends with them. To them, to their parents she never existed. Our daughter to the class of 2028 will never have existed. In the playground I’ll never be Melody’s Mum.

The Shoe Box

A show box with the letter M in it.

There’s one extra thing we’re having to sort for the first few days of school, a shoe box to fill with memories their favourite things to let their class learn a little bit about them outside of school.

Melody lived in a box, she sleeps in a box, and has two memory boxes full of things to help us remember her.

She doesn’t have a box of her favourite things, of her hobbies. It has nothing inside. No stories to tell of her family members, no adventures to share. Photos of her growing from a tiny baby to a girl entering into year 1 are missing, they will always be…missing. I don’t know her.


As if she never existed

I’ll fight to keep her memory alive, continually retelling the one story I have, the short story of her life. It’s all I have but for the children and parents going into year one this week, for the children who become the students of the class of 2028. To the men (or women) she could have met to one day marry. An aisle she once stood at, will never be the aisle she could have chosen as a step towards her future.  To the adults of the future. Melody never existed.

Not just the baby

She is not just the baby we have lost, we lost her whole life. Everything she could have been – gone.


Please Help Me To Understand. The Taboo

A taboo…In the grand scheme of things I am still really new to being a bereaved Mum, I’m still learning. Five years and five months since she took her last breath. Death lasts forever, it happened before her and of course since. In the bigger picture of being a bereaved Mum I am only an infant.


I struggle to make sense of how society is a round baby (child) bereavement. The poor support, the boredom from people who don’t fully understand; the minimal timescale that society thinks a bereaved parent should be over it. If I were to say to a widow, “Isn’t it about time you were over that by now.” Or if someone had said to me, “At least you have your Mother, she can always marry again…” In response to the death of my Dad, I’d most likely have shouted them down if they had.

Disrespectful, downright rude. Yet if you lose a baby, in any way; the babies who never get to stay, I had to hear “At least she didn’t come home.” Or “At least you have other children.” People can be very unkind.

Why did all become such a taboo?

When did is become acceptable to attack a grieving parent? In history the dead (BBC website)-  ESPECIALLY children were remembered and respected in these photos. Staged photo with the dead to make memories, before the final goodbyes were seen as a mark of respect. Infant morality was a lot higher then too.

But why the change?

Friends share their babies who have never take a breath, photos are all the memories they have; but are then told to hide them away in inappropriate ways.

Acceptable behaviour

But in today’s society this behaviour is deemed acceptable. The attitudes of “We don’t want to see or hear about that.” It’s harmful. My own photos have been attacked by strangers, my photos only included her in life. It is harmful to the parents, harmful to the parents who want to make a change, harmful to medical research to try and change the mortality statistics. Because let’s face it there are still far too many babies and children dying who shouldn’t be.

I have donated to many charities in my lifetime from health related ones, animal welfare, refugees. If I can I will. The community spirit in all of the above is how it should be. But you mention baby loss people may as well run for the hills, just recently an acquaintance had a lip curl and even a slight snarl because I had mentioned my daughter, my dead daughter.

We do notice the awkward fidgets by the way.


Talking about these babies, children not only make parents feel less alone but it brings awareness, can ultimately save babies lives or simply open up opportunities for people to be properly supported.

Millie’s Trust came about because Millie died, her parents using her memory have gone on to save hundreds of other from the heart ache they endure.

Maison’s Memory because a little boy died from an accident, now his parents work closely to help with safety measures to keep other babies and children safe.

Towards Tomorrow Together, again because a baby died, and now his parents help give resources to other parents going through the same.

These are just a few reasons why Baby Loss should never be a taboo. I know people get really annoyed and fed up with me speaking openly about you girl, about her death.

It is how I chose to deal with our loss. But most importantly it is because she is MY GIRL, our daughter.

Melody, herself has changed a procedure at the hospital, the R.O.P test, she has changed how quickly sepsis should be treated, and making sure extra staff or more appropriate staff are on in the evenings. The death of my girl did this, talking about our girl did this.


So, please tell me.

Why is it so disgusting to speak and share about our babies?

Why do people think it is okay to be so insensitive to bereaved parents; to insult our babies?

I do understand that it is difficult to speak to someone who is going through such a loss but if you don’t find it acceptable to question a widow, or someone who has lost a parent or even a pet, particularly about replacements and moving on.

Then it isn’t acceptable to do it ao a bereaved parent either.


We need to break this taboo.

We need to keep talking.

It isn’t catching, but it will save a life.


Melody and Me

Melody and me logo, which is a heart with an adult and child hand,