Category Archives: Neonatal Loss Awareness

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

Neonatal loss awareness

Infant Loss Awareness – Kate’s Story

Tilly

On the 22nd of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24th of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

infant and teddy

 

Kate’s Story from Tilly’s Marathon

Thank you for joining us on this awareness series. 

Thank you to Warren, Marissa, Beth, Kate and John for letting me include your beautiful babies.

Neonatal loss awareness

Neonatal Loss Series – Armour. John’s Story

Shields

For many around the world, the concept of a shield is the idea of knights in massive armour, carrying shields with the chivalric coats of arms.  They protect the wielder from harm whilst the other arm carries a sword, mace, hammer, etc.  It can be made from anything from cardboard to Vibranium, and can be small and light, or heavy and huge.  They are made for all sorts of reasons, and for all sorts of missions, quests, but above all: removable protection.

It is armour to protect us, but we put it down; we store it when we’re safe.

For child loss dads we never want to put it away, in fact we carry it all the time, ready to protect ourselves.

Armour

When my wife was pregnant with our first, Melody, I had already experienced that loss, having lost Sophie my first daughter to stillbirth.  When she first told me she was pregnant I was terrified, we had had two miscarriages the previous year, and my biggest worry was that I’d never get to  be called “Daddy”, I’d never hear that word that turns any man into jellied mush…  So I carried that shield with my family crest on, and protected.

My wife became seriously ill with HG, and I was terrified –terrified that events would happen all over again.  But Melody was born; born early, admittedly, but she was bloody strong, a fighter like the Scottish warriors of old.  She fought hard too, coming off her ventilator in less than a day.  So the shield got put down.

And then the nightmare happened again: she died, and I held her in my arms like I did Sophie, watching her pass.

So the shield came back up, reinforced.

And then my wife was pregnant again; this time we made it, despite my wife suffering horribly again, and then again with our last.  I sat helpless, terrified, as all dads do whilst their partners/wives suffer through it.  All we can do is bring them inside the shield.

To put it in another context, it’s like Battlestar Galactica: we’re the Galactica and its famous Vyper squadrons, valiantly defending the Colonial Fleet from the Cylons, fighting against seemingly impossible odds.

Like here:

https://www.youtube.com/watch?v=jOSlOsaJVUo

 

See?

 

It’s hard to let go of that shield, however, and put it on the rack for another day.  It’s hard, but not impossible.  There are battles to come, some more important than others.

 

Sometimes it’s okay to keep the guns stowed and the Vypers in their launch tubes…

 

Sometimes it’s okay to put the shield down….

 

daddy wearing his armour

Melody and Her Daddy having containment cuddles.

 

Melody’s Dad –  John writes for his own blog, although somewhat quiet, please pop over and have a look. Hairy Dadders

Neonatal Awareness

 

Neonatal loss awareness

Nappy-Sacks Danger. Beth’s Story

Miscarriage

I remember the first time I saw 2 lines on a pregnancy test. We had only been trying for a couple of months and I couldn’t believe it would happen so fast. I was scared but so happy and never for a second thought about anything going wrong so 2 weeks later when I went to A+E with red blood I was shocked to be told I had miscarried. I felt like my whole world had broken and remember just wanting to hide away.

Pregnancy

5 weeks later I went to ASDA to buy cough medicine and something told me to take a pregnancy test. I did it right there in the public toilets and was so shocked to see 2 lines again. Part of me worried if was false and from the miscarriage even though I’d had negative tests during it. Right from the start Maison gave me a reason, he was our first little rainbow baby and I honestly thought nothing would go wrong again once we got past 20 weeks.

I had a pretty rough pregnancy involving Hyperemesis Gravidarum, gestational diabetes, SPD and pre-eclampsia so i was induced at 37 weeks. I delivered a very healthy baby boy on 6th August 2012. Except for a bit of reflux Maison was a perfect baby. He was happy and cheeky and we were so in love. He loved people and every day with him was a new adventure. I finally felt like I had found my purpose in life being Maison’s mother.

maison

7th March 2013

The 7th March 2013 started like any other day. I went into Maison’s bedroom to wake him up as we were late getting up. I remember going through the door and straight away seeing Maison lying there with bright orange nappy-sacks over his face. There was also a handful around the top of his head. I screamed and the sound of my voice still hunts me. From that moment it’s all a painful blur. I try and remember but it makes me feel sick and dizzy, I feel like I can’t breathe and like I have an actual hole in my chest.

I do remember that I called 999 but I couldn’t do the CPR so my husband Martyn had to take over. I ran into the kitchen and called my Mom who raced over. The next moment my house was full of paramedics desperately trying to save my son’s life. But i knew he was gone, i knew it was too late. Maison was taken to hospital and i went with him in the ambulance. Martyn was kept behind by the police to be questioned.

Empty Handed

During this they took items of Maison’s and lots of photos. This meant i was alone in a+e watching a team of strangers desperately trying to save my child’s life. It mean I was alone when they gave me that look and said ‘I’m sorry we can’t do anymore’ it felt like my whole world came crashing down. The pain of being told your baby has died is indescribable and nothing ever fills the hole they leave.

I always thought I could imagine what it felt like to have your child die but honestly it is nothing like it. It is something you will never heal from, it becomes part of you and from that moment you change, you become a different person. We got to have Maison blessed in the hospital and have a final hold. Our family all came so they could say their goodbyes. Walking out of the hospital without him was the hardest thing i have ever had to do in my life.

Maison

 

Everybody Changes

I was surprised by all the people who walked out my life when Maison died. People I thought I could count on suddenly wasn’t there when I needed them. I have never felt so alone. I tried different online support but felt I didn’t fit into any of the categories. Maison was too old to be classes as a neonatal death, there was a reason so it wasn’t due to SIDS, there was no illness to blame. His death was just an unlucky accident. Luckily I “bumped” into a bunch of lovely moms online on Babycentre.

They will never know how much they helped me, it was nice to talk to other people who just got it. I know even know years late I can write down how I’m feeling and they will understand. They won’t just reply telling me to speak to a doctor because they know they I can’t be “fixed”

Maison’s Memory

Nappy-Sacks

A few months after Maison died I found out that he wasn’t alone. i heard of another baby who died from suffocating on a nappy-sack so decided to start a Facebook page called Maison’s Memory. We researched and found there were many other babies who had died but there wasn’t much warning on them. Nappy-sacks are usually brightly coloured and make a rustling sound so babies find them very attractive. They are made of thin material which easily covers the face and can be sucked down the airways. Nappy-sacks aren’t required by law to have safety holes like carrier bags so are more dangerous.

I started working with RoSPA on their nappy sack campaign and did lots of interviews to tell people about Maison’s story. I faced a lot of backlash from people who left nasty comments and for a while they upset me. They left me wondering if i really was to blame for Maison’s death? In a way they pushed me to do more and educate more people. If we saved 1 life it was worth the nasty comments. While working with RoSPA i was awarded their archangel award 2016 and got to tell Maison’s story to HRH Prince Andrew. I also got to attend a garden party at Buckingham Palace.

Maison’s Memory has now started the journey to become a registered charity. I’ve planned family fun days and online market nights over the last few months raising money to provide free first aid courses to families. I believe all parents and family members should be trained in the basics of CPR. I also focus massively on home dangers for under 5’s so that another family doesn’t face the heartbreak mine has. I want to run at least one course a month and in the future i hope we can do courses for children and courses with creche services so everyone can learn how to save lives.

nappy-sack awareness

Thank you Beth for taking part in Melody and Me’s Infant Loss Project

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

Neonatal loss awareness

Neonatal and Post – Neonatal Loss Series. Warren’s Story.

A Dad’s Perspective

As I try and raise as much awareness for Neonatal Loss, there is also another corner of the loss community which also gets forgotten, they are the Dads; so much focus goes towards the Mums.

I remember in the early days people would ask how I was but my husband was always asked to make the tea, or look after me and the children. He was hurting too.

Today’s installment is from a Dad

” I broke down and sobbed like I’ve never sobbed before to the point i nearly collapsed…”

I have included the link from his blog today, with his permission. Warren currently volunteers with UK charity Daddys With Angels.

I’d like to say thank you to Warren for sharing his story for this series. Please make sure you click the link.

Warren and Oliver.