Category Archives: Little Daffodils

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Together For Yellow – Nappy-Sacks Danger.

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

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Together For Yellow – Letter To Melody

Dear Melody,

It’s me, your Daddy.

We miss you.

There isn’t a day goes by that we don’t think of you, especially recently. 

Mummy might not have told you, because it terrified her, but I was ill some months ago, admitted to hospital and everything.  It was the same illness that took you from us, Sepsis.  I got it in my leg, no thanks to the NHS, and nearly lost it, potentially even worse. 

Being in that hospital brought so many bad things to the front, having to stay in the same place that we lost you.  Especially for nine days!  Whenever I went for a walk, especially down to the food court, I’d always find myself looking over at the restaurant where me and mummy used to have a dinner or sandwich.  At one point, I stopped and just stood and stared in the direction of the NICU, where you lived.

It screwed me up when they informed me the day I was discharged that it had been Sepsis, the very thing that took you from us.

It was almost like that day we lost you.

I think at that point I hated them, I can’t explain why as such.

But everything flooded back, seeing you on that bed that last time, the staff upset, the doctors apologising.  I had nightmares when we got home, couldn’t face sleeping in case I saw that again without the control of being awake.

And I hated the NHS for what they’ve done, to me, to you.

The same goddamn illness.

I hated that place, because the ward I was on was so close to yours.  And then they told me it was Sepsis that I had, and I nearly lost my leg, or worse!  I felt numb like the day after we lost you, barely able to speak, just wanted to get out of that place.  Mummy drove me home, and my head was filled with all those images of you. 

Since then, all of those feelings I had have come back to the fore.  All those times I got pushed to the side because I was “just a dad”, and ignored, and organisations not wanting to help me.  I hated it, and myself, and now it’s all out again.

Since then I haven’t been able to sleep properly, desperate for this illness to go do one. 

And then Kelsi was ill, and blue-lighted to hospital recently.  I’ve taken a week off work, and realised I really don’t want to go back.  I’d rather be at home with mummy and your siblings than go back to that place, to any job involving cooking, but nobody else will have me, and we don’t have the money to do that.

I miss you.

I’m not alright.

Love,

Daddy.

xxxxx

little daffodils

Together For Yellow – Molly and Grace

Molly and Grace’s Stories.
Massive Perivillous Fibrinoid Deposition (MPFD).

We found out we were pregnant with Molly in mid-December 2010. We were delighted but couldn’t help worry as we had miscarried just 2 months earlier. A scan at 6 weeks showed a little bean, with a flickering heartbeat. We were in love! I spent the next few weeks mostly being sick.
The ‘morning’ sickness continued morning, noon and night. At 16 weeks I had a small bleed. A trip to the maternity unit showed I had a cervical erosion which we were told was nothing to worry about.

We also had the chance to hear baby’s heartbeat through the doppler. In the next few weeks, I started feeling movement. Just before 20 weeks, I had another bleed. Again a trip to the hospital confirmed the erosion was the cause of the bleeding and we had another opportunity to hear the heartbeat.
At 21 weeks, we headed to the hospital for our routine scan. We were shown into the usual room but this time the sonographer did not turn the screen round. All was quiet and I knew something was wrong. She took my hand and said ‘I’m sorry but there is no heartbeat’. I will never forget that
moment. She went to get someone to come and confirm that our baby had died. The next couple of days are a blur. I was given tablets to take and told to come back in 2 days to be induced.
We arrived back at the hospital a couple of days later and were given a side room in the labour ward.
All around us we could hear the cries of healthy newborns. I was given medication to induce labour and the contractions started soon after. That whole day is a blur to me.
Molly was born at 21 weeks on 14th April 2011 at 9:04pm after 11 hours of labour. I didn’t look straight away. The midwife took her away and brought her back to us all clean and wrapped up. I was scared to hold her, scared to touch her. But she was perfection in miniature and so beautiful.


We held her and spoke to her. I was scared to unwrap her and look at her properly. We spent a few hours with her then the midwife took her away. I was in complete shock. I don’t think I would have survived had it not been for my husband. Leaving the hospital the next day, without Molly, was one
of the hardest and most horrendous things I have ever done. Walking away that day was the worst part of the whole experience. We buried our beautiful girl 2 weeks later on a warm, sunny morning.
I have regrets…
…that I didn’t look at her feet, that I didn’t hold her for long enough… I just didn’t know what we were allowed to do and I didn’t have the presence of mind to ask. I look at her footprints and I wish I had looked at her tiny, perfect feet.
July brought results of the tests carried out on my placenta. Molly had been perfect, my body let her down. Placental results showed that she had died due to a very rare condition called Massive Perivillous Fibrinoid Deposition (MPFD). This basically meant that fibroids and clots had formed on
the placenta, gradually taking over until it was no longer fit for purpose and unable to support a growing baby. Consultants put in place a plan for the future: daily aspirin tablets and daily self-administered heparin injections. It was hoped that this combination would stop clots forming and
keep the blood moving through the cord.


We went on to have another early miscarriage at the end of July 2011 and then a pregnancy test on New Year’s Eve confirmed that we were pregnant for the fourth time and, with a treatment plan in place, we were hoping that finally this pregnancy would give us our take home baby. At night, I was
taking my aspirin, folic acid and vitamin D. Also I began injecting the heparin. After a small bleed, we were scanned at 10 weeks for reassurance and all was well. The 12 week scan came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.


We were delighted but still very apprehensive. Our next scan was booked in for 15 weeks. At this point, the baby was measuring slightly behind but the sonographer wasn’t worried and said it was normal to be out by a couple of days. We went round to see the consultant to make sure all was
going well with the medication. He offered extra scans for reassurance and we went 2 days later for the first of those scans. A registrar scanned us on a very old machine. She was concerned about the fluid level but, after looking at our scan photos from the hospital she said they were the same and
not to worry about it if the hospital hadn’t mentioned it.
A few days later, I had a major bleed. We went to the hospital. A doppler let us hear a nice strong heartbeat and put my mind at rest a bit. A scan was also arranged for the coming Wednesday when I would be 16 weeks. This was when our world started to crumble all over again.
The scan on Wednesday showed that there was no amniotic fluid and the blood flow through the cord (EDF) was absent. We were devastated and could not believe that it was happening all over again. The doctors advised us that our baby would die within days and that they would scan us
weekly until the inevitable happened. We met with our consultant the following day. He thought it was the same thing again and told us that this was the first time the hospital had dealt with anyone with MPFD. In fact, they hadn’t heard of it before and the treatment we were on had been their best guess.
The 17 week scan showed baby still had a strong heartbeat although growth had majorly slowed down. However, some small pockets of fluid had appeared and EDF was present. This gave us a tiny sliver of hope and the doctors doubled the amount of clexane I was taking. I also began taking
steroids to see if it would help halt the damage to the placenta. It looked like the condition which had taken Molly from us had returned with a vengeance.
By 18 weeks, my bump was popping out and growing well, I was still being sick. The scan showed
our little star was continuing to fight hard. At 20 weeks our little one was still fighting. EDF was present but growth was minimal. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. We had such a horrendous sense of déjà vu as it was all happening at the same time of year again.
At 21 weeks the heartbeat was still there but the EDF was now absent again. I was advised to stop all the medication.
I woke up a few days later on the 2nd of May and knew our little one was gone. I had movement the night before but I knew when I woke up that something was wrong. A scan later that morning confirmed our little one had died. I was booked in for induction 2 days later.

4th May 2012, 22 weeks pregnant: after 6 hours of labour, Grace came silently into the world at 3:15pm in the same room where Molly had been born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought. She would have been our little
thinker. I wasn’t so scared this time. I held her. I looked at every part of her, including her tiny feet. I didn’t want the same regrets as I had the last time. We cuddled her for hours. The next day, we said our goodbyes. It took us a long time to walk away. Once again, I found this the hardest thing to do. There is nothing worse than walking away and leaving your child behind. It is the most horrendous thing I have ever experienced.


Tests on the placenta confirmed that, like Molly, the placenta was again attacked due to the condition Massive Perivillous Fibrinoid Deposition. They were still not 100% certain of what causes the MPFD to happen, possibly an alloimmune response, possibly an as-yet undiagnosed
thrombophilia issue. They did not commit to either school of thought. What they did say was that the condition was aggressive and recurrent and they were struggling to find anyone else with as severe a condition. We were a unique oddity.

So… they agreed to the treatment plan we had researched that had been successful for people with a similar condition as long as we went into it with eyes open and accept that we were now sailing in unchartered waters with no guarantees. The treatment would include aspirin, high dose folic acid, heparin, steroids and Intralipids.

I became pregnant for the 5th time in Autumn 2012. All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks showed the heartbeat had stopped. This had been so completely unexpected and I felt completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I had been taking all my myriad of medications, focusing on getting to that point and then taking it from there. I had injected myself with heparin over 100 times. I had taken over 200 steroid tablets as well as the daily aspirin tablets. I had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.
Placental tests came back to show that MPFD had returned with a vengeance despite the extensive treatment plan. Even if the pregnancy had continued beyond 11 weeks, the placenta would never have lasted. We were told that I would highly likely never carry a living child to term and we should start to look into other ways of having a family.


Following our 5th loss, our consultant mentioned surrogacy to us. He felt it would be a good idea for us as our babies were perfectly healthy, it was just my body that was the issue. My sister offered to be our surrogate and kept offering until we decided we would give it a go. We used our own embryos
and my sister was the oven! We became parents to a healthy baby girl in Spring 2014 and we feel so blessed.

MPFD did not make an appearance at all. Surrogacy was such a positive experience for us.
My sister was amazing – she would phone us to come up when baby was moving around so that we could feel her moving. We did worry about how she would feel when baby arrived but the fact that the baby was biologically ours and not hers made that easier for her. We there in theatre when our little one arrived by c-section at 37 weeks. We all cried. My sister felt it was such a different experience to having her own. She said she loved her immediately but didn’t feel the rush of intense love she had experienced when her own daughter had been born. I think this was a relief for us both as we had both been worrying about it. Cara knows she grew in her auntie’s tummy because mine didn’t work. It’s just the way it is. What a fab auntie she has!
So MPFD is a condition I still research and blog about. It is so rare, it is important to me that others find some support. When I initially googled it, all that appeared was a bunch of medical papers that made no sense to me. I want others to be able to find a human face to this and also so have instant
access to research and treatment plans which I have collated along with another mum who has the same condition. I also volunteer with SANDS Lothians – a fantastic charity who were a light for us during very dark times.
Despite everything, we are blessed. Every day our little girl brings us such joy – we are so lucky to have her.


MPFD

You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested:


http://lossthroughthelookingglass.blogspot.co.uk/2012/08/clara-massive-perivillous-fibrinoid.html

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Together For Yellow – 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

 

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Together For Yellow – Alex

Alex’s Story

I’d like to share my little boy’s story.

I conceived my youngest, Alex when Teddy (my eldest) was still very young – there were only 16 months between them when Alex was born. Teddy was born 6 weeks early via emergency c-section but after careful consultation with midwives and a consultant, I chose to deliver Alex via VBAC. The whole way through my pregnancy with him I was terrified he’d be born prematurely too. I feel like I held my breath until we reached the 37-week mark. At 37 weeks and 4 days, I went into labour naturally.

All went well and I quickly made it to the magically 10cm dilated mark. At that point midwives were worried about baby’s heartbeat and called for a doctor. He wanted to try forceps but we rushed to theatre in case. Three attempts at a forceps delivery failed and an emergency c-section was performed.

By the time Alex was pulled out of me, my uterus had ruptured and Alex had been starved of oxygen for an unknown amount of time. But too long. He slipped into the world silent and still. The doctors managed to resuscitate him and rushed him away. He was the transferred to another hospital for cooling treatment to try to prevent secondary brain damage whilst the doctor worked hard to rectify the mess of my insides.

I joined my son that evening, having waited a day for a bed. Tests showed a complete lack of brain stem activity despite my desperate pleas and prayers. The first night of his life he crashed but doctors brought him back as I tried to rush my bruised and broken body down to the NICU. His body showed the trauma he’d been through and we signed a DNR to prevent further trauma. Life support machines kept my son alive for 3 days, but on his fourth day we made the heartbreaking decision to turn them off.

He never opened his eyes.

Never cried.

Never fed or needed a nappy change.

But he made such an imprint on my heart.

I’ll miss him forever.

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Together For Yellow – HLHS – Danyl

Danyl’s Story

I found out I was pregnant with twins in April 2017. I was scanned a lot with it being a multiple pregnancy, but was actually signed off as low risk at 16/17 weeks pregnant. We had had growth scans, listened to their hearts and everything seemed healthy. Then at my 20 weeks scan they discovered twin 2 had a problem with his heart.

We were fast-tracked to be scanned at fetal medicine and cardiologists from other hospitals came too. They confirmed he had HLHS at this point. Meaning half his heart didn’t work properly, it was under developed (the left side that pumped oxygenated blood around the body).

From this point we were scanned every week and every week it was like they found another problem. We were advised to terminate because they were really concerned with me progressing with this pregnancy. After reading everything we decided we would go ahead with the pregnancy to give our twin 1, Dylan, the best chance at surviving. We would be monitored and obviously we had to Take our pregnancy day by day.

We had a plan for every situation should the babies have had to be delivered at different points. Towards the end of my pregnancy we had the plan of delivering the babies and then if all was well being transported to the hospice to receive end of life care for Danyl. We were heart broken that we were planning this but we knew the team very well by this point. Then at one of my last scans we were told Danyl was doing so well we may be able to take him home for a few weeks. At this point I asked again if surgery would be an option for us (even though I knew he would never be cured of his defects, surgery would have been palliative too) again we were told that they were very worried about our baby and he wasn’t even here yet.

So we went home to get our heads around the fact we may get to bring our baby home. It was at this point I let my mam and husband try and sort out things for the babies, I hadn’t allowed myself to buy them a single thing because we Genuinely didn’t know if anybody would survive. Anyway fast forward for their birth 12/10/2017 and they were both born and doing well. We were kept in for 5 days. It was so weird getting to know your babies and trying to be happy and grateful for them both arriving but signing DNR forms and knowing one would die.

It was really surreal. It was so scary bringing them both home. Looking at Danyl, he didn’t look poorly. He didn’t need any medical intervention etc and people were genuinely shocked when they saw him. Danyl was at home with us for a year and 10 days. Some days were a real struggle looking after 3 babies under 2 and 1 being seriously ill. We were prepped to go back to the hospice at any point and were told what changes to look for. Changes in feeding, nappy output, visually etc. None of these changes actually came and the day he died was actually just a normal day.

He had a routine check the day before and everything was his normal. Looking back I’m pleased I didn’t see a change. He didn’t look different, he didn’t need any of the drugs we were given etc. He just looked like he always did and he just fell asleep. We are now dealing with the ‘what happens next’ Oliver my eldest receives play therapy from the hospice and we are continuing with counselling etc.

 

 

HLHS – Hypoplastic Left Heart Syndrome is a birth defect, which affects normal blood flow through the heart. This is found during pregnancy when the left side of the heart is found not to be forming correctly.

Turn Yellow For Little Daffodils Week

little daffodils

 

Little Daffodils is a pregnancy and infant loss service, which provides group and online support, as well as face to face to anyone who finds a group environment difficult. We also supply sibling memory boxes and offer a stay and play session for children who have lost a sibling, so parents can gain support with those who understand.

Little Daffodils Awareness

This year we have decided to give Little Daffodils a much-needed boost, with various fundraising events to help extend the services which we provide. With this in mind, we are launching a week-long campaign to raise much-needed awareness for our fantastic network, by introducing a “Turn yellow for Little Daffodils” week.

This will run from the 19th February to 26th February, with a wave of light on the 26th.

We will be raising awareness of all losses, including various stories of loss and hope; sharing their precious babies.

We will share the services we provide; as well as information to help prevent women from the heartahe of losing their beloved baby. Plus signpost information about what happens when your baby dies, and what there is to offer. Small things, which can hopefully make a huge difference.

We would love to include your story; whether it is one of your babies who couldn’t stay, or how you come to meet the baby after. Sometimes the greatest power is knowledge; knowing about the conditions which take them from us can empower us to ask more questions.

This will be shared across Instagram, Facebook and Twitter.

You can find pictures here, should you wish to turn yellow in suport of our first campaign.

I hope you can join us. Stronger together.

#togetherforyellow

#littledaffodilsawareness

Little Daffodils Birthday Packages

Little Daffodils – Birthday Packages

Birthdays are happy occasions; days to treat the ones you love to a special day. A celebration of love and a new age, watching their faces on their very first birthday as they watch the balloons float around the room. Piles of presents, with beautiful wrapping paper which will be torn in seconds.

The first birthdays of adulthood, 18th birthdays, 21st even as you get to the later birthdays they are a celebration worth having – especially when you have children.

Un-Birthday

Then there are the babies and children who never get to grow up, some never take a breath while others stopped growing when their hearts stopped. Some may have reached a birthday or two, while others just miss them. Even after their hearts stop, they still have birthdays most have registered dates. They are still very much remembered on these dates; by family and friends birthdays are significant for almost everyone.

With this in mind, the babies and children won’t get to receive birthday presents, some are silently remembered. Little Daffodils I set up isn’t just a face to face support group, it now offers a special package to all families who have lost a baby and child with a special birthday.

These children deserve to have acknowledgement.

The package is only small but is a little gesture to let families know they aren’t alone.

There is a little card, a tea light for missing candles on a cake; a little butterfly and a crystal rainbow maker, to give some colour on the darker days. All inside a little box.

You can add your birthday details to the little daffodils email address.

 

We will also roll these out to parents who have lost much older and adult children too. It is just a small gesture to know that you are being thought of, around such a difficult time.

Little Daffodils Birthday Packages

Little Daffodils

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Together For Yellow – Tilly

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.

little daffodils pregnancy and infant loss support service

Happy First Birthday Little Daffodils

First Birthday

A year ago in March I made connection with Towards Tomorrow Together Founder, Mel Scott, I’d been planning to set up a pregnancy and infant loss support group for a while, probably from about six months after Melody had died. I wanted it to be a step towards breaking the silence, that is pregnancy and infant loss, a step to bring support to anyone who feels alone in this journey.
The date for a launch had been set, I began to feel incredibly nervous about the set up, so to help make my dreams into a reality I decided to contact Mel. With another Mum, Tracy the pregnancy and infant loss support group was launched.  
Where Mel came over, we had a lovely evening, albeit a small number of people had arrived, but we did however launch a truly unique group.
With the support from Mayor Dave Bulmer, local Midwife, Health visitor (although not pictured here).
It was lovely to bring awareness for what would hopefully become a successful support group. 
We have since moved from St Mary’s Rooms to now hosting the group in the upstairs rooms of Eleos, for which we have been incredibly grateful to their kindness and support, even when we do have the quieter sessions, they are always incredibly welcoming.

Reflection

This week we hit our very first birthday, it has only just dawned on me, that we have reached a year, so no balloons or big party, but a bit of reflection.
We have had some truly lovely people cross our paths over the past year, to share their stories, to find hope. It hasn’t been a particularly busy group, but it has been in my eyes successful. When we first started it was said if we could help just one person, then it makes all the hard work worthwhile, we’ve helped more than one, either as the group setting or via private messages.
I am pleased with that, of course not pleased that people have to find us, I wished no-one needed our resources, but to hopefully make other people feel less alone.

A Year

It has been an incredible year, raising the much needed awareness for baby loss, we were able to do things I never imagined possible.
 
From Radio Interviews, which included speaking about a Butterfly Award nomination, as well as raising awareness for the group and various public speaking opportunities. One of my (I think I speak for Tracy too) favourite moments was meeting the Archbishop of Canterbury, that was an amazing experience, such a lovely man. I could have spoken to him all day, he really made speaking about Little Daffodils and our story really easy.
 
We, with the help of other Mums, Sam and Gemma,  have hosted a couple of fundraising events, a coffee morning, table top sale and our very successful Barn Dance, which raised just over £1700! It was hard work, but an incredible experience to be involved with, and every single person had a wonderful time.
 
It has been a few months since the event, the awareness has grown somewhat, with most recently collecting a cheque from the Mayor in front of many inspirational people, we had been included in the town’s community fund, where we will be using it for study and awareness sessions for the town’s professionals.
 
We also recently had our very first Family Session, it was a lovely couple of hours, we even had Anna and Elsa for the occasion. We’re hoping to make this a regular session, but are actively looking for a new venue, which we’re really excited about.
 
So, this is Little Daffodils, First Year, huge thank you to everyone involved in getting us to our first birthday, I am excited to see what the next year brings.
We still meet the first Tuesday of the month from 730pm, upstairs of Eleos in the centre of town.
We have a fundraiser in August, with organising well under way, lots more awareness for such a fantastic cause. (It’ll also be in aid of St Margaret’s Hospice too). 
Thank you for reading and for your continued support. I hope to still be here for our second birthday.