Monthly Archives: February 2019

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.

little daffodils pregnancy and infant loss support service

Together For Yellow – Charity Awareness.

charity towards tomorrow logo

Pregnancy and Infant Loss Awareness Week

This week remembers and spreads awareness about the babies and children who have passed away. I have always been open and honest about my grief journey; my thoughts after Melody died. I don’t really need this single week to do so; however it gets people thinking, it gets people talking, it brings the taboo to the forefront of people’s minds. In the hope that one day the taboo will be a distant memory. We have a long way to go.

When we walked out of the hospital after Melody had died; it became apparent from very early on that the support as a whole for bereaved parents really is few and far between; even more so with Melody’s death. Leaflets, awareness, even charities concentrated on a few scenarios; which of course is amazing, the more awareness the more chances women and professionals will be able to reduce the rate of death. But it can leave parents like us feel alone, pushed out and even more isolated.

Charity

From the first few days I took to online support; but knew I wanted to help more; there’s so much more I want to do. I decided that I would like to try and get a group together. It was something I felt was missing. I ended up contacting Mel Scott of Towards Tomorrow Together, a charity who supports families who have lost a baby through miscarriage, stillbirth, babies with poor prognosis in utero and they included us. So essentially all losses, nobody gets excluded.

Little Daffodils was born; although it was originally named Melody’s Voices I came away from a prestigious baby loss event in 2016 – The Butterfly Awards and knew that giving support and making a difference was so much more than doing something in her name, and in her memory. Daffodils are the flowers for us who represent Melody but they give so much colour, but only live for a short time. I really want to make a difference; sometimes it can feel like I am hitting a brick wall; others when people message for support and then say thank you, I know something must be doing.

Towards Tomorrow Together provide Butterfly Boxes to hospitals to help families create memories in the short time after a baby or child has died. Unfortunately it isn’t something we personally received (back to the lack of support), but they do bring comfort to families who have to leave without their beloved children.

Education

Through the death of her own baby, Mel has worked tirelessly to raise awareness, put together educational sessions – I have even spoken at one; and in the midst of putting one together myself, with the help of Mel.

It is difficult to get across to professionals the real thoughts and emotions behind losing a baby; through textbooks there should be a time limit. There isn’t.

This Somerset run charity works a lot from fundraising, this year Little Daffodils as a team has made £1900 with various fundraisers.

There is so much more to do within the baby loss community, especially for infant loss awareness; it will take more than a week out of a year to achieve it, but we do need to keep talking, keep listening most importantly to not let any parents – Mums and Dads feel alone and unsupported. Their – our babies mattered.

She wasn’t “just” a baby. She is ours; she was here for five weeks. She is Melody.

Julz.

baby loss, grief

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 and weekends. 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 to 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

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