Category Archives: Little Daffodils

little daffodils

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

little daffodils

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. 
little daffodils pregnancy and infant loss support service

Family Drop in Session..Little Daffodils

Why it is so important to have this session.

In May 2016 Little Daffodils (formally named Melody’s Voices) was formed as a support group in Chard for parents who have lost a baby during and after pregnancy. Working with the Somerset Charity Towards Tomorrow Together, we have formed a solid partnership.
When I was putting the group together, there was several questions about whether or not Children could come to the group.
Being a parent who has lost a baby, and have other children, you kind of become like Clark and Superman.

Split personalities

But on how you react to such loss. There’s a mask, a different identity to wear one for the children (and often even to people who don’t truly understand), and one where you can be incredibly honest and open to the heartbreak that is baby loss, scream, swear, shout or simply sit in the silence whilst you take what has happened to you in.
Then there is the side you have to be around the children..
The ”I’m ok, Everything is fine” mask.
So the decision was made to not allow children to the evening sessions, to allow parents to be free to speak, share a tear or two, or just that time to concentrate on just themselves and the loss of their little one for a couple of hours.
Having a family session allows anyone who doesn’t have child care, or who’d like to come as a couple but normally can’t the opportunity to be able get some bereavement support, we are a very friendly bunch of people, who would like to help; this could be a small step to being able to come to an evening session, when you are ready.
Parenting after a loss, can be very different to how you would before, and at times can be incredibly lonely, when reaching out to other people, particularly if the other people don’t quite understand what you are going through.
We’ll have the usual “toddler” group set up, (I say toddlers, but of course older and younger children are also welcome), toys, chairs a cuppa and cake, both Mums and Dads are welcome too.
Talk as little or as much as you want, or not at all, just being in a place surrounded by fully understanding people, is sometimes all it needs to feel slightly less alone.

First Session, special guests

Little Daffodils’ very first family session, (here) will be held in the grounds of St Mary’s Church in Chard, from  Saturday 22nd April 11am until 12.30, it’ll be £1 per family, come and meet us, have a cuppa and some cake, see what we’re all about.
We’re very lucky to have the lovely Anna and Elsa come and join us too.
We would very much like to see you there, even if the circumstances should have been nicer.
Thank you for reading
Julz
Little Daffodils Team.

Melody’s Voices

To Make A Difference part two.

A little while a go,I mentioned about the baby loss face to face group I was working on.
The launch happened last night, Tuesday 3rd May. Once again unfortunately the attendance wasn’t huge,but I’ve come to realise this isn’t a reflection on me. I will push through this. Although attendance wasn’t huge,it was a fantastic evening. With new support I certainly was not expecting.
With full backing of health visitors,the local midwife,undertakers and now our town mayor,it has made me feel incredibly positive, that this will be a step forward in the right direction.
Opportunity to have an event or two.

mel and julz
(I hate my photo being taken!)

Group

Personally I think people assume that a group of this nature will be full of tears and sadness. Breaking down.
But it won’t be like this,of course there will be tears, having such losses are hardly a walk in the park.
But I’d like to enable people a safe place,where they can rant about their loss,not be met with judgement.
I’ve been to a non loss related group, the moment you’re picked out from the crowd,for not doing as the expected, belittled in front of strangers,almost forced to tell these strangers your biggest fears.

For Melody’s voices, I’d like people to feel welcomed, but not pressured to share their story. Come sit quietly,listen. Open up if and when you’re ready.
Come and talk about our crazy weather. Or listen to things you may relate to.
For me I know my conversations aren’t the same as someone who has never lost.

I really am excited for the future of this group,to be able help someone.

We’ve now a date for an event in October,we’re not sure what the event will be just yet, currently putting a committee team together.

Next group is Tuesday 7th June 1930.
We have tea and cake.

Thank you for reading and to those of you who continually support us.
Xx

 

To Make a Difference.

 

Towards Tomorrow Together

A year or so ago a lovely lady approached me with her wonderful plans of an idea to help bring the community together. A much needed service for the people of our town. In particular to offer decent maternity service,that sadly lacks in a lot of areas due to funding.

At St Mary’s was born.
Not only to offer much needed Maternity Services but a variety of other support groups in the area.
A venue that has had various groups over the years such as Brownies and toddler groups.
Set in the grounds in one of our beautiful churches, it will now become the home for my very own project,a project of course that is close to my heart.

When I was first asked,I felt so thrilled to be given such an opportunity. Unfortunately I became I’ll,so my project went on the back burner. Until recently have started to go full pelt,into getting it up and running.
I am thrilled to say I have support the Somerset charity
Towards Tomorrow Together. Who help provide support to bereaved parents.
I will look after the branch in my town.
I’ve (hopefully) provided support online and hoping I can continue face to face.

We have a launch date of Tuesday 3rd May 2016, At St Mary’s starting approximately 730/745.
I feel so honoured to be able to have this opportunity.
We will have monthly meets,and a rainbow group to eventually follow.

Please head over to our group TTT Somerset Baby Loss Support Group. Where we will have dates and more information.

I am also looking at a name change for my group. It is currently Cake and Cuddles. But with discussion would love to incorporate Melody’s name.
Any ideas greatly received.

Thank you for reading.

I wish Becky and her team the best of luck. Thank you to you,Sue and Mel for giving me a chance to make a difference.