These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.
A beautiful cloudy Violet sunset over our house last night
Lack of control
I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).
The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.
Poorly child
When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.
Violet in hospital the day she later died suddenly
Regaining control on life
I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.
Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.
Photo of our house during the renovation with Dexter our GSD in shot too
More of a control freak
Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.
My advice is to try to do other things you can control to try to balance out those things that you simply can’t.
Big hugs and lots of love
Sarah
Always Violet Skies xx
You might be interested in reading these other posts –
This week has been a really challenging one for me because my baby has been properly poorly for the first time. Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.
Sick baby
Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful. Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.
The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.
Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).
Poorly little girl but check out that fabulous curl!
Sleepless in Manchester
The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.
Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.
Holding baby while she sleeps
The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.
After a loooong 24 hours of hardly any sleep and at last she sleeps!
Rainbow baby’s are difficult
You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.
The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.
What are the chances?
Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.
I’ve seen what hell looks like and I’ve experienced unspeakable pain. I have sat by the side of a hospital bed for days and nights on end. I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs. I’ve stifled back my own crying and sobs so as not to distress my poorly child. I’ve told my crying child that all of this is to make them better and lied that they will be ok. I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.
Living nightmare
You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow. I can tell you that hell is watching your child in pain, being tortured and then them die. Then you have to arrange their funeral before somehow going on with your life.
I never ever want to go back there again thank you. If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it. If I have to hold her while she sleeps then I will do. Anything I need to do I will do it.
I also keep having to repeat the same mantra over and over in my head.
“This is a different baby. A different person. She isn’t the same. ”
To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too. Sometimes it’s tough being a parent.
Big love
Sarah – Violet Skies
Have you read these other posts about Rainbow babies?
You may remember a post I wrote a few months back now about how I tried to not worry about my pregnancy by deliberately creating other things to do or organize in my life in order to stay busy. One of these was an extension and house renovation project.
Extension and house renovation
This two storey extension project began back in April and comprised of two new bathrooms, a new kitchen, full house rewire and new central heating with new radiators. Getting rid of a very narrow galley kitchen and extending the back of the house to create open plan living with a large kitchen dining space. We would also get a new bedroom upstairs so we’d have more room for visiting family and friends to stay with us.
Sacrifice
Our old boiler was ripped out in April so we lived in our house for 4 months with no heating or hot water and for the most part had no rear wall either just chipboard. Thankfully we still had an old electric shower so that was the sole source of our hot water other than from a kettle. A temporary kitchen was set up in our lounge and dining room. We had our oven, washing machine and dryer and sink all in the one room with all our downstairs furniture. Our fridge freezer had to be moved into the hallway next to the front door. It was a combination of camping and being in an episode of Steptoe and Son.
Other things to worry about
Thankfully it did work in taking my mind off worrying about the baby for a lot of the time as instead I worried about the mess and chaos. I concerned myself with ordering the relevant materials needed in time and designing the kitchens and bathrooms. We also boxed and bagged our belongings so they could be stored in the loft as the rewire and new radiators meant all of the floorboards being ripped up. Then was the day-to-day dealing with the dust, mess and noise from builders.
Just relax
I remember the midwives and specialists telling me I should try to have lie ins and naps to help with fatigue caused by my pregnancy and the hole in my heart (see this earlier blog post for more details on this). I just laughed when they suggested it, explaining the builders arrived at 7am everyday and you try sleeping at lunchtime when there is hammering, drilling etc.
Building work later than due date
Unfortunately our building work also ran over schedule and our baby Aurora arrived ahead of time by a few weeks. So it did mean we had to get alternative accommodation when we first came out of hospital. Thanks to an AirBNB stay and then some amazing next-door neighbour’s, who leant us their house while they were on holiday, the baby avoided most of the noise and dust.
Now the hard work begins
So now we are slowly decorating, unpacking and sorting out our new-finished house bit by bit. It isn’t easy with a newborn baby but we are so happy with our new kitchen space. We can fit more than one person in there at once, and the bathrooms are exactly what we wanted. Despite the craziness and my doubts half way in we’re pleased we went ahead with it in the end.
Kitchen
So far we have almost finished the kitchen space. We went for a navy blue kitchen with copper accessories and a white mistral worktop, which is a solid acrylic that can emulate marble. It is stain proof so much more durable, with a baby and a clumsy mummy we felt that was essential. The pendant lights were from Wayfair.
The stools I adore and they are from Cox and Cox. Whatever you do though if your health visitor says they love them and want to know where you got them from, don’t tell them to just google Cox. That caused a lot of laughs when the hubby overheard!
New lounge area
The seating area of our new downstairs extension will eventually have a new sofa. But for the meantime with the budget blown we have created a little lounge space with Ikea Poang chairs, stools and rocking chair. Added into this is a gorgeous rug from Dunelm, a sheepskin rug for cosiness, an original Moroccan silver lamp purchased in Marrakesh in January and some silk cushions that I’ve had for about 20 years. The best buy is probably the faux fur stool I purchased today from Aldi for only £14.95 but looks more expensive don’t you think?
Eclectic
I love being quite eclectic with my décor so there’s a real mix of new buys from the high street, old vintage things like the silk cushions I have had for years and hand me downs. The lovely chunky wooden coffee tables were from my mum. I like to get the odd piece from our travels hence the lamp from Morocco we saw in January. I also got bright coloured fabric from there that I will swap into that room for the summer, when we can then open both sets of bi-fold doors across the back of the house.
Have you bought any lovely things for your home from your travels? And if so please share your finds as I’d love to see them?
This project has really helped to take my mind off things and it continues to be a passion of mine, although I’m miss impatient so want to finish it all at once when it will be a long term project over the next few years as we have an entire house to decorate and dress.
Please share some of your favourite home photos.
Speak soon, love
Sarah x
Always Violet Skies
P.s. please ignore the state of our garden we will look at that next year! lol
Most people have never heard of an amazing charity called AvMA – Action Against Medical Accidents, probably because until the worst happens you have no need to seek them out.
Introduced to AvMA
We were introduced to this organisation by the Manchester coroners office, when we were first informed that there would be an inquest into our daughter Violet’s death at Manchester Children’s hospital.
The coroners team said it was highly likely that the Manchester NHS trust would employ their own barrister for the hearing, when it finally happened, and that they wanted us to feel supported, as though someone is on our side. They said they didn’t want us to be bullied by the trust’s representatives and that an organisation called AvMA might be able to help.
Legal aid?
You may now ask “well what about legal aid?” It turns out that no matter what your financial situation in this circumstance legal aid is not available for an inquest hearing. Can you imagine the additional heartbreak and stress for anyone who is grieving a loved one and believes their death might be because of negligence or an accident but has no free legal support? We were quoted upwards of £1000 by several solicitors to pay for legal advice and support for the inquest.
No win no fee?
You may ask “what about no win no fee” though but this also isn’t available for a coroner’s inquest as this hearing looks solely to find the cause of death not to apportion blame or result in any type of compensation. In order to get a pay out you would have to have a separate legal proceeding in front of a judge rather than a coroner and this would be after the inquest and is a separate legal action entirely.
AvMA
AvMA provides free independent advice and support to people affected by medical accidents (lapses in patient safety) through a specialist helpline, written casework and inquest support services. They can put patients in contact with accredited clinical negligence solicitors if appropriate. They also work in partnership with health professionals, the NHS, government departments, lawyers and, most of all, patients to improve patient safety and justice.
Our case
For us it meant having a trained barrister examine all the documents associated with Violet’s death and care whilst in Manchester Children’s hospital. This proved invaluable to us as she requested certain things we hadn’t noticed were missing, such as when we asked for a copy of Violet’s medical records the hospital hadn’t included any of her X Ray results, of which there were many. We then had time to request them ahead of the hearing.
Violet in hospital watching TV
Judy, the barrister that volunteered her services to us, was amazing. We had a conference call with her a few weeks before the inquest and were pleased to see that she’d pulled together a list of her main concerns that all tallied with ours. She had done extensive research, including combing through not just the post mortem report but also the medical reports and all of Violets notes (that we couldn’t bring ourselves to sift through again). She also consulted various medical professionals she knew to get their advice on things.
Support during the inquest
At the inquest itself both Julia the representative from AvMA and Judy our barrister were amazingly supportive. Judy asked all the questions we wanted and cross examined some of the witnesses, the various specialists and consultants responsible for Violets care while she was in the hospital. We passed Judy notes from the table behind with any additional questions that came to us while they were giving evidence, and before the coroner had finished with a witness, Judy always double checked with us that there was nothing else we needed to ask.
Saved further emotional trauma
I was originally instructed by the coroner to read out the police statement I had given immediately after Violet died and Judy said she could ask for me to be excused from doing this because I was heavily pregnant and the additional stress it would cause. We didn’t even realise this was an option and the coroner said he would admit the statement to the records as a printed document instead. This saved me having to undergo further emotional distress on the day.
Violet playing with her balloon the morning of the day she died
Outcome
Ultimately the inquest couldn’t bring Violet back and we got some answers but not really the resolution we wanted. However I’m not certain we would have received these same answers if we hadn’t have had AvMA and Judy helping us. It was a traumatic day with lots of tears, so I doubt we would have had the strength or wherewithal to ask so many questions ourselves. Their help and support at what was an extremely vulnerable time for us proved to be priceless.
Legal expenses
Judy and AvMA only invoiced us for their expenses, which totalled less than £200, including travel costs from London and an overnight stay, so when you consider the thousands a barrister would normally charge this was a bargain. We’ve since given a larger donation to the charity too, so we can help them to help someone else like us who find themselves in an impossibly heart wrenching situation.
Caring charity
AvMA operate as a charity offering support to parents and families like us whose loved ones have died or been seriously injured because of what might have been a medical accident. This will be the hardest most traumatic time in their lives and as a result they are certainly in need of support, especially around something that could result in answers, justice and in the case of proven negligence, when someone is seriously injured, later on a possible future financial payout too, that could make the difference to quality of life.
I know this charity isn’t as attractive or as immediately heart tugging as a animal, Children’s charity or a cancer cause but rest assured they can make a huge difference to people’s lives at a time when there world has just ended. When they are already struggling to deal with the grief and shock of losing someone, in our case our 15 month old daughter.
It won’t happen to me…
You never think this type of thing will happen to you. That one day your perfect little life bubble could burst and you lose a child or someone close to you but if this happens then you certainly need legal support from someone like AvMA as life at this time is overwhelming and devastating enough without adding a looming inquest to the list.
If you can afford to donate to this amazing charity, even if a small one, then please do so as you could help someone like us who has said goodbye to their child. If you’re a legal professional and would like to donate time or expertise to work with the charity to help someone like us then please do take a closer look as we’re so grateful to Judy for giving up her time and expertise to help us.
Barristers donating time
Judy explained to us that she understood a little of what we had gone through with Violet, as her daughter had been premature so she had spent lots of time with her in hospital and luckily she was healthy now but she knows how scary it can be to be a parent of a sick child. She said she can’t begin to imagine then losing them and then the stress of the coroner deciding to launch an inquest into what happened too. After reading our case she felt compelled to help us. A truly wonderful lady and we will be eternally grateful to her for her help and compassion.
Here’s a link about AvMA please take a look and consider giving them some support if you can
When you’re experiencing pregnancy after loss you expect to be stressed throughout the entire 9 months, so every scan becomes a milestone and you count down until the next scan or check happens. It has actually believe it or not become easier as time has gone on because the more positive scans and checks you have the better you start to feel too.
PTSD
What you don’t expect only 2 weeks before D Day, which for me is C day really, is to suddenly start getting horrendous nightmares that stop you sleeping.
I spoke to my GP about it and she said oh that’s post traumatic stress disorder because you’ve had two extremely stressful birth experiences previously. The closer you get to your c section date the worse these might get, not to mention the stress and grief from losing two previous children.
Great just when I thought I’d nearly done it and we were finally on the home stretch my subconscious seems to want to remind me of the previous nightmares.
WARNING anyone who is pregnant stop reading now as you don’t want to read this part, if you’re squeamish too or eating at the moment (don’t worry there are no photos)!
Previous birth experience
In my first birth experience I was induced to give birth to Violet at 37 weeks of pregnancy. They said it’d be less stressful for her, given we knew she had a heart condition and the crash team would be on standby to whisk her straight to the neonatal unit. Unfortunately I wasn’t offered any positioning scan to check her head was definitely engaged. All the various midwives and consultants that examined me told me she was in a perfect position. We were induced on the 14th June 3 times in total and she was finally born the night of the 15th.
Undiagnosed breech
Both of us nearly died. It turned out she was undiagnosed breech and no one realised until her bottom appeared instead of her head. She was classic breach too so like a resting frog or a roast chicken with legs tucked either side because of that her legs wedged her into my pelvis so she was stuck for over 10 minutes. They eventually had to use brute force to yank her legs out then tear her out of me quite literally. The afterbirth shot out with her like a pressure cork across the room along with nearly 2 litres of my blood.
Violet wasn’t breathing when she came out. They had to resuscitate her before taking her to the neonatal unit and they had to take me into the operating theatre to repair the third degree tears caused. Oh and did I say I was given no pain relief either, despite requesting some repeatedly for well over a day? I now know the excruciating pain I had felt too for over a day was her toe nails and elbows scraping along my insides on her way out.
Decided to insert a happy photo of me & Violet – it makes me smile!
Giving birth to my TFMR
My second birth experience wasn’t any better as this time I had to deliver Arthur sleeping at 22 weeks. We had had to make the difficult decision to terminate him due to severe medical reasons a few days earlier. Apparently I was told it would be much easier physically than birthing a larger full term baby. As he wasn’t alive I could have maximum pain relief. I opted for diamorphine injections so got my first one when contractions began and could have another 4 hours later. So 4 hours later happened and, as they were preparing to give me more pain relief, I starting birthing him so they couldn’t continue with the injections. It was explained to me that it’d be easy to push him out as he was so small. Then all they’d do is give a little tug on the umbilical cord, once he was out, then the placenta would come away easily.
More complications
So my poor tiny sleeping baby came out and then they gave a little tug but the cord snapped. I started haemorrhaging, they hit all the alarms and the crash team rushed in. I still had no more pain relief but was told to take deep breaths while a consultant put his hand inside my womb. Yes my actual womb meaning my cervix had to open the width of a normal sized baby’s head! He manually scraped the placenta out. Then another consultant had to do the same to check they got it all. In the meantime I’d lost a litre and a half of blood. Over the next week I found myself in and out of hospital. I had infections of my womb. Extremely low iron and blood pressure. Not to mention dealing with the grief of having delivered my dead son, almost a year after we buried my daughter too.
Here’s another happy photo – I actually hate my frizzy hair/no make up in this shot but her facial expression is perfection.
First step to conquering PTSD
Today I achieved the first step to get over my PTSD as we had a tour of the labour ward and operating theatres in the hospital. It was the first time I had been back on that particular ward/area since having Violet. I broke down into tears, as I was taken right back to just over 3 years ago. I was proud I did it. Hopefully now it will be easier for me to go back there again in a few weeks time. Fingers crossed I will be much less stressed.
So there you have it the main reason behind my PTSD. Plus the reason why this time they are giving me a Caesarean section so just hoping this one goes smoothly because I bloody deserve it (excuse the pun & the language!).
NCT
The amusing thing is that after I had Violet the National Childbirth Trust contacted me to ask would I consider becoming a volunteer to talk to expectant mothers about my natural birth experience! I said I didn’t think that’d be a good idea, as they would have nightmares, not realising at the time that it would be me having them.
Childbirth and PTSD
Not many people talk about PTSD from childbirth experience so I wanted to share in the hope others come forward or feel less alone. I know the vast majority of people have relatively straightforward birth experiences and I don’t want to scare anyone. No one really supports those that go through horrendous ones. I felt I should share my stories in the hope others feel they can share theirs.
I have now been offered help in dealing with my PTSD but the treatment isn’t advised when you’re pregnant so they will work with me on it in a few months.
Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.
Inquest
Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.
Will this be the light at the end of our tunnel? (photos taken beneath a glacier in Iceland)
AvMA
Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.
Questions for barristers
My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.
Stress and worry
The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.
I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.
Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.
It’s not all doom and gloom when you’re grieving the death of your child strangely enough there are lots of positives.
Appreciation
The main positive to come out of it is that you really appreciate the good in life and the usual things that would have brought you down really don’t matter anymore. So what you get a parking ticket, ladder your tights or forget to take an umbrella out with you, so you get drenched in that sudden rain shower.
All these things at one time would have stressed me out but now I simply shake things like that off, as in the grand scheme of things unless someone has died or been told they have something incurable then it isn’t really bad news compared to your child dying?
We’d happily give up anything to get our daughter back. If someone wanted me to sign over everything I own to live on the streets or to kill myself in order to get her back then I would do in a heartbeat.
Violet loved playing with her drum & other instruments
Empathy
The only issue with not being as fazed with day-to-day incidents, is that it reduces my ability to sympathise or empathise with others. If someone has also lost a child, found out they have cancer or face losing a loved one then I know how to relate to them. I understand totally how to empathise with that situation. However if I meet someone who tells me what a nightmare week they have had because they broke a heel on their favourite pair of shoes, had something go wrong with a client at work or have a child that’s teething, then I really find it difficult to sympathise with this.
In fact it often irritates me and makes me annoyed that to some people this is the extent of their bad week. I would love for that to be the worst thing that has ever happened to me!
I feel myself having to practise saying “oh dear I’m sorry to hear that. Poor you” without sounding sarcastic; when I really want to say “pull yourself together”, “get a grip” and “worse things have happened, man up would you!” “You could be like me and have a child die now that’s a bad week!”
Drama queens
I find it so hard to tolerate drama queens too and we all know some. Where chipping their nail varnish is a disastrous day and their boyfriend or husband working late is a nightmare. I simply try to avoid these people now, as they have no idea about the normal world and yes there’s sometimes a sweet innocence about them that you have to love. Currently I find them so frustrating that I almost have to resist the urge to shake them.
So if you need a shoulder to cry on or a friendly ear for a “real” problem then I’m all ears with tea and sympathy but if your problem isn’t life threatening. If it has to do with not being able to find the right dress, then please forgive me if I don’t sound sincere when I say “poor you how awful”.
