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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 pregnancy and infant loss support service

Little Daffodils – In Memory

Little Daffodils
When we first lost our daughter, there was virtually nothing to support us. Cruse came out and were brilliant – but only for me.
Other places, we found had set policies and how people are supported. Which meant that her age put a barrier, too old, too young or didn’t die the “right way”.
It made us all the more isolated, which is the opposite of how we should have been treated.

Setting up little daffodils was my way of trying to bring awareness that all losses needed to be supported in the way they deserve.

Now it is the last thing I have to do with Melody. The last thing I can do to change things in her memory. I’ve thought many times of giving up, doing this sort of thing alone is bloody hard work

The thing I find incredibly difficult is that I have to fight to get melody recognised, she’s official in the eyes of the law; birth and death certificates, but when it comes to baby loss awareness Post-Neonatal gets lost. It feels like a fight to get little-daffodils out there. It wasn’t meant to be this hard. That said, I can’t just give up little-daffodils, it is literally the only thing I have left to remind me that she existed. It is the only thing that I HAVE to do.

The blog I can take a break from whenever I want to, but the group is something I need to keep going to. It is incredibly painful when her type of death doesn’t get mentioned, over and over I have to wonder about her being as important as all the other babies who die. She mattered too. It’s the last thing I can do for her.

I started this in 2015 to make sure she and other babies are recognised and their families get the support we never did. I can’t turn my back on that, I can’t let her fade away if I stop little daffodils I think that is what will happen. Because I fear I may just forget. That is not what I want. In her memory, I wanted to raise awareness, and change the way families are treated. Nobody should ever be left in the dark…

ALL BABIES MATTER.

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

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