Tag Archives: neonatal death

wisdom

Wisdom. Capture Your Grief

What wisdom could you share for family and friends wanting to help a loved one who has experienced the death of their baby or child? When she died we made the difficult decision to share her death on social media. But of course, looking back now I wish we’d waited and announced in a more controlled environment and slower. But I guess there’s not a right or wrong way to have done it. We were receiving “Get Well” wishes, but she had already gone.

Wisdom for friends and family.

Make sure you contact the parents/family of the lost child. Their whole world has been blown apart, they’re looking for people to give answers, for eyes that tell them that everything is going to be okay. They’re also looking for blame, for someone to say it was all a mistake.

It’s so isolating, not everyone will be able to understand what you are going through, but empathy goes a very long way. Thoughts on helping a family to remember their baby, allowing them to speak freely, without being forced to feel like they have to move on, get over it or remain silent. Their much loved, much wanted child died, the unimaginable has happened, families need love and not misguided advice, which ends up hurting people more.

Leaving the bereaved alone, leaves them questioning themselves about their actions, about why nobody wants to support and help them.
Making them feel like they’re to blame for everything, from losing their child to losing their network of family and friends.

It’s important to keep being there, they’re allowed to cry, scream and be angry. But laughing and joking, it doesn’t mean they’re healed; it just means that they are finding a way to cope, to be free from the pain of losing their child; even if for just a moment.

Just be there when the bad days are dark, because the lighter days are of beauty, and shouldn’t be missed.

healing

Healing. Capture Your Grief

What does healing in grief mean for me? Well, the very first thing I would say is that I’m not healed in a way that maybe I should be. You know, when you imagine an open wound that eventually closes over through scarring. It is there you know it is there, but it remains closed; it is almost forgotten – at the very least you don’t think of it much.

When people combine the words healing and child bereavement, all the above is exactly what “outsiders” view. You go through the stages, the death (the initial puncture to the skin), the coming to terms and things like the funeral, (the beginnings of healing). Then the aftermath (the final scarring, healing process). Then you’re meant to just get on with it.

But healing from the death of a baby or child, looks completely different. There is no scar tissue to help rebuild what is hurt; it doesn’t protect you from more pain. It can feel relentless, like the heavy painful feeing will never go away; reopening at unexpected moments.

You simply do not recover from this.

Healing looks different.

Healing isn’t always about moving on and forgetting. It comes in the shape of tears and laughter. Anger and joy. For me it I about being able to carry a legacy on for her. I have struggled with believing that she is with me all the time, I wish she as – but she isn’t. However, by talking about her, doing things in her memory, helps me with the guilt which surrounds her birth and then her death. I guess, it is like a walking stick, it helps me feel like I am doing something for her.

 

Time is a healer.

It isn’t, I just makes the length of time since I last held her longer, seem so far away. Time makes me forget things, it makes me forget her smell, and how she felt. Time makes it hurt more.

 

I’ll never be healed, but I know how to adjust the tape and glue.

Essence

Essence. Capture Your Grief

Essence

Day Three of the Capture Your Grief project. A little bit more about who they are. My reason behind this project. The essence of her being.

 

Who Are They To You?

She was going to be our rainbow honeymoon baby. We’d lost two babies through early miscarriage before her; conceiving her on our wedding blessing night gave us the key to our new married life together. Adding her to the to children I already had. She is my third child, she will always be my third child – now the middle one. My older two were so excited about having a new baby in the house, we all were. Although I’d had the miscarriages, after taking home two children, I had assumed that she would too. We simply never imagined anything other than brining home a rainbow, as that’s what Rainbow babies do; right?

 

Do They Have A Name?

We didn’t know her gender until the week she was born; so, we often played about with names. Had she been a boy, she was going to either Xavier Or Gabriel Severus. Our original choice for female name was Autumn Amelia. Autumn, because we thought it as a gorgeous name, and Amelia after Amy Pond from Dr Who. Anyway, that year there was a singer on one of the singing shows, and her name was Amelia; we knew it would probably become popular.

I often had boxset marathons due to having Hyperemesis and not being able to go too far from a toilet, many names popped up. Then Christmas 2011 came that all important Dr Who episode, “Hello Sweetie…” Melody Pond was introduced to us. (River Song). We both instantly said how much we loved the name; her middle name comes from NCIS character Caitlyn (Cate).

I remember when she was born, and we were told that she was alive; then asked her name. I felt so proud telling them her name; not knowing whether we would see her again alive.

 

What Is The Meaning of Their Name?

Melody is a Greek name which means song. I am so pleased we went with a reasonably unique name.

Essence

xx

purpose

Purpose. Capture Your Grief 2018

 

Introduction

 

Day Two of the Capture Your Grief Project. Today is about sharing why I am doing the Capture Your Grief project. From the beginning – 2012 was the first Capture Your Grief project, I was also in the first months of being a bereaved Mum. I wasn’t sure what I was doing with it, but it soon became a good resource to speak openly about the loss of our daughter. I had many people read them, it seemed to help other people understand a little bit of what I was feeling at the time.

I used it as an excuse to openly talk about her, like I had permission to do so. I always say the previous year will be my last; last year I didn’t complete it.

 

Purpose

So, 6th year for me. As I didn’t complete last year’s I am determined to complete this year. But I also know not to beat myself up for not completing it.

My purpose for Capture Your Grief this year is to continue talking and sharing our daughter. I would like to raise as much awareness as I can through this project, for the support group I run and most importantly to talk more about the babies who live but then die.

A lot of the awareness for baby loss is focussed on the babies who don’t live past pregnancy, which is fantastic. But when you see messages, poems which include just these babies it makes babies like mine feel less important. So, my purpose is to keep talking, reconnect with parts of grief; with parts of love that I have forgotten.

Baby loss isn’t just one month, it is forever, whether you chose to talk and remember or not. I think people who have never experienced that often forgets that any type of grief can last a lifetime; but of course, with losing a child it is a lifetime we also lose.

 

See you tomorrow.

xx

 

 

 

 

 

 

https://www.facebook.com/CarlyMarieProjectHeal/

Capture Your Grief - Sunrise

Sunrise. Capture Your Grief 2018

Introduction

Today marks the first day of Pregnancy and Infant Loss awareness month. It is a chance to speak openly and share experiences; to break the taboo that is baby loss.

This is a project put together by fellow bereaved Mother – Carly Marie, a way to share thoughts on baby loss, sharing our babies and raise as much awareness as possible. I have once again decided to give it a go; I didn’t complete last year’s – it was the first year I didn’t complete it. So, I will take one day at a time.

 

Carly Marie - Capture your grief 2018

First of The Month

The first of each month is always a reminder of the anniversary of loss, the first of the month when you’re excited for what’s to come as events move closer. In 2012 we had a discharge date of May 2012; it was our goal, what were all clinging on to – leaving the NICU behind us. Early April 1st of the same year I remember getting a couple of excited text messages stating she’d be “home next month”; we were all so excited, only a month to go.

Little did we know that after these messages were exchanged and that when we reached the hospital that morning, everything would be different. That May would come and go, a discharge date would just be a day in the month that only we would remember.

April 1st, she died. October will always be the half way point, six months since – six months until. I remember hitting six months, it seemed like such a significant time which had passed; yet felt like no time had passed at all. Wondering how we were going to get through each day, let alone another six months with Christmas and her birthday during the following six months.

 

 

Sunrise

I remember waking up from the first longest night after she died. My eyes were closed, but I hadn’t slept. Everything about my body felt heavy, weighed down desperately hoping to know that I had been asleep, and it was all a terrible nightmare. It was strange knowing there was a sunrise, yet our daughter had only just died the day before; it didn’t seem right, none of it did.

That year we had a heatwave during the whole time she was alive. When she was born Spring had arrived with her, she had brought glorious sunshine; there is stayed until her funeral. I got sunburnt in March and was wearing vest tops and flip-flops. Beautiful weather, it made our trips to the NICU bearable, dreaming together of what our sunny days would be like once she left, how she’d love playing with her brother and sister.

Just a couple of weeks prior to her death, she was able to feel the sun on her face through the window, she wasn’t keen, but we knew one day she would love it. That was the only way she ever felt the sun on her face, no and between her toes; or an ice cream by the sea.

 

sunrise

She never witnessed a sunrise.

Coping and Sharing #togetherforchange

Coping And Sharing

I think we all cope differently, we can empathise with each other’s stories but the way react can be completely different to the next person. I think that is why child loss is so difficult to understand.

 

When Did You Tell People?

Death was no longer in our daughter’s plan, we had been given a discharge date to go home – we were given hope. So, the morning of her death when we phoned over to them, as we did every day we were told to make our way over to the hospital as she wasn’t feeling very well; we assumed they were considering transferring her to a bigger hospital. We never expected what we walked into that morning.

I used Facebook a lot throughout her pregnancy, I was poorly they helped, so we placed a status asking for positive vibes as they were putting her back on a ventilator. When she died at 9:30 we came outside to inform our close friends and family, but were still receiving get well soon messages; so by 11:30 we decided to announce our daughter’s death on Facebook – basically hit and run just to stop the positive messages coming through.

 

How To Deal With The Return To Work?

I chose not to. I chose to completely walk away from the profession that I had done since I had left school. I couldn’t face doing that job any more, I knew this quite early on; I loved the profession but I was done.

Unfortunately employers aren’t always very sympathetic when it comes to needing time to grieve the loss of a baby, especially if you’re outside of the maternity timescales (either too soon or too late); even more so for Fathers.

Ideally having good communication is a must with management, to ensure that you aren’t rushed back to work or that you lose wages, being in debt can be the final straw when something so devastating happens. Going back too soon could have an effect on your mental health and being able to concentrate on your job role. But also leaving it too late can have the same effect, through avoidance. It is trying to find the right balance, or like me it could be the step to make a big change, for me was to change my career.

 

How To Talk To Family And Friends After Loss

As hard as it is, try to lead them through it. Let them know how much or how little you want to talk. Showing them that crying is okay; that you’re not sick that you are grieving. And at the same time, if you don’t talk or want to show emotion that is perfectly okay too. The people close to you often fear of making your pain worse by mentioning your loss, but often by not mentioning can hurt just as much.

Friends and family can both find it incredibly difficult, and often leave you feeling alone. This often ends up being a secondary loss and can be just as difficult to deal with as the actual loss of a loved one; leaving you questioning whether you’ve done something wrong.

But finding that right support network, will come to mean everything to you, it’ll be something you’ll not forget.

 

What Part Did Social Media Play?

As mentioned before, we announced her death via Facebook. But afterwards the online support for me became invaluable. There is no way I would have gotten to where I am today without them. Finding the right support has been unbelievably difficult because of our situation not fitting the right criteria for the right support. So, turning to online forums (one being a pregnancy and parenting forum) was for me the next best thing. I could avoid people’s avoidances in the street, I made friends.

But at the same time, as much as the online network played a massive part in the healing process, it can make you feel incredibly lonely in your own home community that can slow things down.

 

How Do You Cope With Announcements From Friends And Family Who Are Expecting?

In the very early days, I shut myself away, hiding any pregnancy announcements and updates that I came across, it often felt painful. There were days where I found people expecting girls harder, often boys going home was equally as difficult, as we had been told that because she was a girl, she had a better chance.

Over the years the announcements have gotten easier, but I always have the (silent) niggling worries for all the negative reasons. What I do find more difficult are those who are eager to bring their pregnancies to an end; wishing for earlier babies, trying hard to bring labour on before they’re ready. Even babies who are born when they are ready can be born poorly, and need time in special care. Even after losing Melody, as quick as a few weeks later, I remember people wanting their babies before their time – for me that hurt, as although she was very early, it means her story isn’t teaching enough.

My eldest daughter was born just a few weeks early and needed to go into special care, my son born 5 days early, just about got away with going in.

 

What Advice Would You Give To Someone Who Is Finding It Difficult To Cope And Share Others News?

Find someone to talk to, even if it online. Write your feelings down, get them out that way. You are allowed to feel anger and sadness, but you are also allowed to be happy too. It doesn’t mean you are over your loss, or people see you think you’re all okay not. That balance can be found.

Definitely take one day at a time, there is no rush and it isn’t a race.

Understanding Emotions. Exploring Grief.

Grief affects people in many ways, each in a unique way to themselves. There isn’t any right or wrong way to grieve the life you have lost. This includes losing a child; we all know it isn’t the right order of life, this is what makes child loss so complex; it is the unimaginable, the unthinkable. No two people’s experiences are the same.

 

What kinds of emotions might you feel after loss, and how do you deal with them?

I think it is hard to fully explain what emotions you feel. I could say I was sad and devastated, but I have felt sadness and what I thought was devastation during my lifetime, neither of them could be associated with the aftermath of our daughter’s death. Neither seemed to match up with the pain that rips through your entire body; yet at the same time leaves you barely standing, but somehow you find the strength to leave the hospital and begin to figure out what the hell happened, and what would be next. You just keep on breathing.

You have to deal with it; there isn’t a right or a wrong way of dealing with such a loss. Many people assume that bereaved parents curl up in a ball and cry all day – so what if they do, if trying to sleep away the pain is a way of making the early days easier, then let them be. This wasn’t something we did, we had to grieve not only for ourselves but for my older two children too; we weren’t free to break in the way people expected to, we had their feelings, their grief to take into consideration.

I know people expected us to hide our loss away, but they had met and spent time with their sister, she wasn’t going to just disappear one day.

Everything about the early days are raw and overwhelming.

 

What are the common triggers for these emotions?

In the beginning, the sheer thoughts and memories of what has happened can be a hard trigger. Going over and over the hours which led to her death and knowing that no matter what thoughts enter your head; there’s nothing that will ever change the outcome. That part takes your breath away – every time.

The milestones which followed her death, especially within the first year but even more so the second year dates too. These are hopes and dreams which had been taken away; a missing child from events or birthdays. Not knowing who they could have become, or how they’d have fitted in within the family setting.

 

How Do You Deal With Grief?

It is kind of like learning to walk again, I am a completely different person to how I was before. It has been the most difficult times I have ever experienced, and hope to never experience such things again. As mentioned before, having the older two children, I had to learn to deal with my grief very early on. I couldn’t break the way I truly felt I needed, even the funeral there was no real room to collapse in a heap and sob loud sobs, to let myself go. I wanted to be strong for them. But at the very same time, we have always followed their lead; allowed their tears, (don’t get me wrong, they have seen me cry on occasions too) allowing them to feel their grief for their sister.

Giving up was never an option.

 

What Effect Did Social Media Have On You?

It became my saviour; I was very poorly during pregnancy and had made friends with people who were due the same time. They supported me throughout the pregnancy, and then continued to do so when she died. Online loss forums were also a lifeline too, it helped me to feel less alone. I felt more comfortable being at home, it was easier than watching friends cross the street or people just completely ignoring you. Social media, made the early days a tiny bit more bearable.

 

What Advice Would You Give To Someone Who Is Experiencing The Complex Range Of Emotions?

Please remember your baby, infant, child has died, there is no at least. Such a loss simply cannot be belittled or swept away.

There is no rush to find the new normal; there is also no pressure to lose your old self either. Take one day at a time, take one hour at a time if you need to; rushing through the grief process can at times set you back. Sadly your baby will always be gone, but self-care is incredibly important to recover enough to function.

Don’t be ashamed to cry, let it out – scream; sob if you need to. It isn’t fair and it should never have happened, babies and children shouldn’t be dying. So, letting yourself go to the emotions is more than allowed.

Don’t give up, you will find peace. One day, maybe not straight away, but you will learn how to cope, you won’t heal; you’ll just know how to make the grief comfortable.

 

There is no timescale.

 

Opening Questions

Tommy’s Together For Change

Melody and Me

Memories. The Weather

The weather is always a big conversation opener, particularly at the moment whilst we have the snow – being in the South West of England, it is the first time since 2013 that we have had any snow to actually speak of. I was pregnant then, with Melody’s little sister, the year before I was pregnant with Melody.

There was snow annually; I remember not wanting to go out in case I slipped – something I have done a lot in the snow; I didn’t want to risk hurting my unborn baby. I remember looking forward to our new baby’s first experience of snow how she would react, lots of wonder.
She never got to see the snow, but the following year I was pregnant again unable to risk the snow again; fearful of making those magical snowy plans.

The winter always reminds me of her, as she was alive and a fully expected baby; it was exciting; which is exactly how it should be when you have a growing bump.
We do obsess with the weather as a nation, most often it does bring people together; where the snow reminds me of her pregnancy; it also brings some memories of her life on the opposite scale.

Heatwave

In the year that she was born – 2012, the whole time she was born we had the most amazing weather, an unusual weather for the time of year (February-April). It would be the hottest March on record. The day she was born was a glorious sunny day, I could remember just being able to see what the weather was doing through the window from my bed; I wish I had taken pictures of our surroundings that day; it makes up part of her life.

The Spring had come early that year; I guess that is why we associate Daffodils as her flower.
There were days when we had to be away from the hospital – often at their request, we’d walk into town which is a fair walk away, particularly when you have had major surgery, often without a cloud in the sky it was beautiful blue skies for days on end, we could sit in the hospital grounds to enjoy the sunshine. I wore vest tops and flip-flops; whilst my husband had his sandals; it was hard to imagine that I even got sunburnt in March.

Apparently, it is such a rare occurrence (at least according to weather records); I always enjoy associating the heat wave with her life, she was able to feel the sun on her face a couple of times too whilst she was out having a cuddle; I am glad she did. It made our visits easier; it helped us to be able to find space away from the building.

It rained on the day of her funeral, just as we began her celebration – it then became the wettest Summer on record.
These little memories are a big deal; these are the nicer ones.

memories the weather

Melody and Me

Grief Timescale – We’re Not Ill

My grandparents are in a cemetery; my Dad is in the same one, burial spaces decades old. I don’t visit them often, not because I have forgotten them, or I am finished missing them; their cemetery is just outside of our town, it is not always easy to pop out to visit them.

I talk about them; share memories. People listen and they too share memories of their missed loved ones.

In the years since I have lost my grandparents, since I lost my dad, since my mother lost her husband; it never ever occurred to me that there was a time limit of how we grieve.

Of course the loss of these people, were – are very different to losing our daughter. Losing her and watching others go through the loss of theirs; the way in which society brushes off our losses.

When we visit our daughter, which we don’t very often these days; we do at least for special occasions; like her birthday, anniversary and Christmas; more often than not carnival and Halloween too. As we walk through the cemetery and see beautiful fresh wreaths places onto graves whose names have faded, or are decades old; still loved and still very much a part of whoever tends to said graves. I would never judge, or have ever thought of this as an odd thing to do.

I certainly would never question their grief, or that they still tend or speak of them. Every single person’s grief is individual, we all wear it differently.

What has led me to here? Well I came across a news article about a Mum wanting to decorate her baby’s grave. This isn’t an issue to me, or to anyone other than the family. But I made the mistake of reading the comments from the general public – our society; whilst I have no idea who the family involved are I think it effects every single bereaved parent.

There were comments after comments about the Mum needing help, counselling; how she should concentrate on the children she does have. That seven years is too long to be grieving or visiting a grave.

I don’t think it is because I am a Mum who has buried her child; but it would never, ever cross my mind to question the grief of anyone – to judge another person visiting a lost loved one.

Can you imagine going to someone and passing comment about how they visit their husband too much? Or that they talk about them too much now that they’re not here.

I genuinely cannot understand why society feels the need to judge on such a personal thing, an emotion often raw. I am five years down the line – almost six; but there are some moments that will catch me off guard and take me back to that raw emotion of hearing the words. “She isn’t going to survive.”

With me being five years down the line, I have questioned myself about whether I talk about her too often; whether I visit “too much.” I have also often wished this had never happened, that she wasn’t my daughter; I have also debated about never visiting her grave.

But I can’t simply block her out; and I am no one of those people who doesn’t believe she lives within us, if you have followed over the years; you will know this is something I have always battled with myself about.

Letter M in a garden.

When I don’t visit I get that huge guilty feeling, especially if it has been weeks on end; I also feel guilty if I don’t take her something; I know she doesn’t know any difference –  and I am painfully aware that she is dead. But I am her Mother; just as I feel guilty when I can’t watch my son’s choir concert, or forget his University show.

The times when I can’t afford to buy my eldest the latest Now album; or the days when I accidently don’t treat them all the same.

So, when I read how society believes I should be how they think I should be over her by now; how visiting however many years is unhealthy. Let me tell you, the only thing that is wrong here; is not that I cry for her occasionally; that I miss and talk of her.  Please help me to understand.

It is that she IS dead; there is absolutely nothing I can do about that; but I will forever be her Mum. I can’t cuddle her or tuck her in to bed, I can’t see her walk across a stage ready for her Nativity; or hear her sing out of tune.

I can’t have a school report; or see Christmas Cards for her from her friends. I’ve never held her hand to walk across the road; just like she will never have a sleep over or taste ice cream.

She, we will have never experienced any of these things.

So if I am still visiting her grave; or including her this year – five years on or in 25 years; please don’t judge; be kind; don’t assume that I am ill.

I am her Mum; the only thing that is wrong about this is that she died.

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

BRAIN DEAD.

Goodbye

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.

neonatal

Baby Drake