Tag Archives: post neonatal death

M in forest

Post-Neonatal. Fight or Flight

When we walked out of the hospital after the death of our daughter – Post-neonatal death; I never expected to spend the years afterwards in what feels like a fight or flight mode. Nearly everywhere we turned there was nothing, and I have said this many, many times. I think I have repeated this, because I cannot get my head around how little support there is for babies who lived, then died, the ones who never came home.

Fitting In

I have searched for statistics, for facts for something for us to fit in. Yet there’s almost nothing. It is bloody lonely.

 

Where exactly is it we fit in? I know people can’t help it, because I guess babies who are older than 28 days are more than likely to live – or are they?

I feel as though I am on a losing battle, talking about her. Even if I screamed in my biggest voice, would I ever get listened to? I know I do in a way; because people tell me so. But in a way to make change, to make neonatal and post-neonatal losses heard, to make their statistics drop.

If I have to be a bereaved Mum I at least want to fit in, to feel less alone. Can you imagine what it feels like to be told that when your baby dies, there seems to be a cut off for support, because she was too old? Or that we were bumped off or down the list? To have a session where not only was it in the G.U.M clinic (sexual health), but the person listening wasn’t massively interested in talking about our loss; but had an opinion about falling pregnant again afterwards.

Breathe.

Awareness

I have so much I feel I want to achieve. I have let fear get in my way for almost six years now.

Our daughter was born due to HELLP syndrome, a severe form of Pre-Eclampsia, a condition that is quite clearly STILL under researched – When I say clearly I mean being told by two different midwives that you don’t get pre-eclampsia before 28 weeks, the second time being after the death of our daughter (she also stated that you don’t get it twice). It can kill.

I want to help. (There have been in talks about case studies).

I suffered Hyperemesis throughout each of my pregnancies, each getting worse the more babies I had. Another under supported condition, a condition that leads women to abort, commit suicide or die from malnutrition, (a contributing factor to the death of Charlotte Bronte). That and living with mental and health issues afterwards

I will help.

Melody died at 35 days old, she died from overwhelming sepsis. 35 days. Post-Neonatal Death.

She had a good chance of coming home, but she didn’t.

I want to help lower the mortality rates of these babies. I want to show their parents that they really do matter; to be recognised more.

I hoped by setting up Little Daffodils that I helped a little in making that step towards supporting people, making sure people are never left alone.

Post-Neonatal

There is so much I want to do, but have no idea where to begin. I want to change so much, the maternity services, the bereavement services. I would like throw the text books out of the windows and burn them, because no BODY is the same. Women and families should not be treated as such.

Tonight I feel a little angry at the world, and how cruel it is to feel essentially thrown out into the cold, when all we ever wanted was the warmth that we watched others have*.

I need to now figure out the next step.

But maybe when I feel less angry.

Ideas are welcome, links to places I can contact. I want to do more.

*I was lucky to have online forums, people slate the online community a lot, but if I hadn’t had them I honestly do not know where I would have been.

 

Thank you for reading.

Post-Neonatal awareness

 

Clear and Let Go

Text block "Sepsis Stole Our Baby"

Sepsis Stole Our Baby

Our daughter at 5 weeks old, who never left the hospital, contracted sepsis. A sepsis (which we were told is similar to Meningitis) swamped her tiny premature body.

Rewind 5 weeks.

Due to contracting HELLP syndrome in pregnancy, I was minutes from seizing so the the decision was made to have an emergency c-section at 26+6 weeks.
We had been told she had great odds of survival, 80% actually; even more so because she was a girl.
She was expected to be on a ventilator for at least 10 days.
Less than 24 hours later she no longer needed the ventilator, she switched to the Cpap machine. This, we were told she’d be on for a few weeks too. The next day she came off that too, switched to a Vaportherm machine, which gently gives oxygen, to ensure her lungs wouldn’t stick together.
She surprised everyone.

A Little Diva

She sailed through everything she was meant to.
Feisty little diva – knew exactly what she wanted; including pulling up to 8 feeding tubes out a day.
We even had a discharge date, a date to make plans as a family if five.
Five days before she died, she was out for a cuddle, we loved our cuddles, all her requirements would settle her, she’d be so relaxed. This particular day she had an apnoea whilst on me. She was whisked back into her incubator, feet were rubbed she came around.
We were told that babies often forget to breathe, and she was at that point due for another transfusion.
It was scary.
We visited again I mentioned she had slight odema in her arms, we were told this was normal, not to worry.

Cuddles

I was able to have a cuddle, only this time I was terrified of hurting her.
She was in need of some relaxation, time to recover from her transfusion. Premature babies need lots of rest, even after nappy changes and feeds.
3 days before she died we visited with a milk run, where we discovered she’d had a test – an eye test, we’d only heard about it through other parents on the ward, we didn’t know she’d be having one too.

They don’t like parents being present due to how invasive and distressing it is for the babies (although in hindsight, maybe a cuddle would help the distress), can often make babies unwell.

I only saw her in the incubator on that visit, she had really found it distressing she really needed rest. Her oxygen requirements were raised.
The following day she was still recovering, but she was able to have a feed. We were hoping for a better day. Her final full day, we visited, her O2 was still raised but she seemed to have perked right up. I was allowed a cuddle her brother saw her out of the incubator for the first time.
We left the hospital that day on a high, with plans for the next day for have a girlie day. My eldest daughter was going to get her first cuddle.

Everything Changed

Less than 24 hours later Melody was gone.
No girlie day, no warm cuddles.
She died.
Over night, the night in which we’d had a wonderful day with her, she was changing.
The O2 requirements increased, in turn she needed a ventilator to breathe for her.
Her heart was restarted 5 times.
Antibiotics sooner could have changed our outcome, something none of us will ever know.
With her CRP level at 110. The sepsis taking hold of her, there was nothing more that the doctors could do.
When we walked into the unit, with only a hint of what was to come (we thought she’d had either another apnoea or was going to be transferred), only to be told our five week old miniature Princess wasn’t going to survive.
We had to say goodbye.

Sepsis

It wasn’t something we were greatly aware of; that Sepsis and Meningitis could happen in a place where your child has never left.
We were surprised when we were told this. We knew that there was another baby poorly with suspected Meningitis on the ward, but we never knew just how common it is in the NICU.
Of course knowledge probably wouldn’t have helped her; we’re not doctors. But awareness that it can happen.
However you never get over the shock of having your seemingly healthy baby die.

NICU Parents

Never be afraid to mention changes. Although the nurses see them every day, as parents we’re the ones who learn every single inch of our babies, their bodies.

Ask questions. If you don’t understand then ask again, explain that you didn’t quite understand.
That baby is YOURS.
That part is hard, I found sometimes it felt like she wasn’t ours at times.

Make yourself aware. I never knew milk banks existed, or that I could get breast milk from other sources. I didn’t want her to have formula, it seemed harsh for her tiny tummy, but I couldn’t pump enough, quickly.

Learn about the procedures and tests, again ask. If you’re not happy get a second opinion. There are things we would have wanted and declined had we asked more.

I often wonder whether I did enough. Asked enough, spoke up for her.

Sepsis can happen in the hospital, in the NICU and can kill. It can destroy everything.
It stole our baby.

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.

Society

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.

Awareness

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.

Understanding

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,