A Mother’s Guilt

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Guilty

I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other. About how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?

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Their shared graveside

Second child syndrome

I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.

Our rainbow Arthur

We never knew Arthur.

Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound.

Legally he doesn’t exist

Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate.  He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.

Arthur scan
A photo of Arthur

Easier to talk about Violet

It’s much easier for us to remember and to talk about Violet as lots of people knew her. There are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.

No shared memories or friends

Arthur bless him doesn’t have any shared memories or friends. He didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s. We’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.

Photos

This blog is full of photos of Violet and that’s great because we have lots of her. She loved having her photo taken too.   It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.

Violet in a pretty dress
Violet at 1 year old

I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible. She would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?

What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?

Love, Sarah x

No answer and no conclusion…as yet

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It’s very true that no parent can imagine the pain of losing your child or baby until it happens. It might sound like a cliché but your world, as you know it, really does come to an end.

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Violet’s grave in Southern Cemetery that’s now also Arthur’s resting place too

Cause of death

It is hard enough when you are given a definitive cause for their death through a post mortem report but what happens if it is inconclusive and you have no answers?

Inquest for the truth

If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead.

We wish she was still alive because she’d be two and three quarter years old now!

Delays in answers

We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital. It was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing, that will then be a whole 20 months after her death. It makes us wonder whether those involved with her care will even remember events and actions from that long ago?

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We took new balloons to our babies today – Violet would have loved the dancing monkey

In limbo

In the intervening 20 months of our lives we have been in a state of limbo awaiting answers. We have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request. Even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust. Even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.

Rainbow baby number 1

In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital. Who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems.

We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious. It must be something super rare or undetectable by today’s technology.

No reason why

The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things. The practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.

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Has anyone else gone through something similar? I’d be interested to know.

Sending lots of love & hoping for answers soon.

Sarah x

My Story

I am a proud and heart-broken mother to two angels.

My first angel

My first born was a beautiful baby girl named Violet who beat all the odds after she had open heart surgery at just 4 days old at Alder Hey Hospital. She lived a full and happy life for 15 months until passing away suddenly at Manchester Children’s Hospital. We didn’t know what happened and the coroner launched an inquest (read about it here)

Swimming shot

My second angel

My second angel was our rainbow baby Arthur who was born sleeping at 22 weeks, almost a year after Violet passed away. He was a TFMR and had severe brain abnormalities.  He gave us so much hope for the future and when we lost him in September 2017 we felt as though our hope for the future died with him. (read more about it here)

Graves

The last few years

It has been an extremely devastating and challenging few years for both me and my husband. Despite all of this devastating news we still strive to make the most of our lives, as we understand how fragile life is and how much our daughter Violet loved life. She wouldn’t want us to mope and suffer. We’ve learnt to be grateful for the 15 wonderful months we spent with her, that we might not have had if it wasn’t for the top NHS heart surgeons and care at Alder Hey Hospital we had in the very beginning.  To them and especially top heart surgeon Mr Prem we will be eternally grateful. (link to our fundraising here)

Violet Skies

A friend of mine suggested (over a year ago) I try to help others by giving advice and strategies for coping with loss. So this blog has been a long time coming but I have waited until I felt strong enough to share. It will detail the ways in which I have tried to deal with everything in case it might help someone else who has unfortunately found themselves in a similar situation.

It won’t all be heavy or emotional reading though as lots of my coping strategies include travel, eating amazing food and architecture/interior photography. Hopefully it will make enjoyable reading for those out there that are lucky enough not to be in a situation like mine. It will be full of photos showcasing some of the amazing places we have travelled to and the things we do in memory of our beautiful children.

I hope this site can give others inspiration and hope to overcome anything they are currently battling with in their lives.

Love & hugs,

Sarah

Interesting blog posts –

Pregnancy after loss & PTSD

What happens when you get your rainbow