So our little rainbow baby had her one-year inoculations the other day so we had a few days of high temperatures, a distressed clingy baby, waking every half an hour over night and whimpering in her sleep. It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day.
Our first born Violet died suddenly at 15 months old and looking back her health slowly deteriorated over her final months so slowly we didn’t really notice it until it was almost too late and then it was too late.
Our rainbow baby, Aurora Violet’s baby sister is now approaching 13 months old so we are ultra sensitive to any slight change in her behaviour, routinely checking her temperature and we whisk her to see the GP as soon as she coughs more than a few times. Over protective parents have nothing on us!
Violet in her final months started sleeping a lot worse than she did before and we assumed she was waking because of hunger but discovered on admission into hospital that it was because her oxygen levels were plummeting. Aurora is displaying similar sleeping patterns so we’re awaiting sleep study equipment to monitor and check her oxygen levels while she sleeps.
Our rainbow baby has an appointment with a top lung specialist too, even though as yet she currently doesn’t have anything wrong with her chest (that we can tell). It makes us feel better that she will be double-checked. You may think “what a waste of that consultants time if there’s nothing wrong with her” and someone expressed that to me.
Well her sister saw countless GPs, several paediatricians at two different hospitals, several accident and emergency consultants, a variety of different registrars at Manchester Children’s Hospital, with varying levels of qualification and experience. Yet not one of them managed to accurately diagnose Violet while she was alive. It wasn’t until after a full coroners inquest nearly 2 years after her death that we even found out what the issue had been. This top lung specialist was supposed to see Violet when she was in hospital but she died before he got around to seeing her and perhaps he may have diagnosed her or not we will never know.
So I’m not sorry in the slightest if by now playing the “my dead baby” card means that my rainbow gets the best specialist healthcare because you know what she and we bloody well deserve it. I have paid my taxes (as have my family all our lives) and we fully support funding the NHS which yes needs more funding today so babies like Violet don’t die in hospital while waiting to see a specialist.
Until you have been in our shoes and watched your child deteriorate, suffer and then die in front of you whilst no one has an explanation as to why. Then come object to me but until then I will stand and scream if I have to until I know my child is safe, healthy and happy.
If your child is ill too let me know as I’m happy to advise or scream for them too.
Maybe we didn’t shout loud enough with Violet? Maybe we didn’t kick up enough of a stink? Maybe I should have bundled her into my car when I decided Manchester Children’s Hospital weren’t doing a good enough job and driven her to Alder Hey hospital?
Well you know what this time if I need to then I bloody well will and god help any healthcare admin person who dares stand in my way!
Have you ever had to question healthcare professionals? During Violet’s short lifetime we experienced the very best of the NHS and the very worst too. What are your experiences?
Always Violet Skies x
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After travelling over 22,000 miles from UK to New Zealand and back via Singapore and Bali with a 7-month-old baby Violet in 2016. Then doing the same trip again with an 8-month-old baby Aurora this time taking in Singapore, Australia and Hong Kong too we now have some top tips for anyone flying with a baby.
Request a bassinet
If your airline is long haul then you should be able to request a bassinet for your baby which will mean you will need bulkhead seats so make sure you select these when checking in and choosing seats online. A bassinet will prove useful not just for when your baby sleeps but they can be propped up to play with toys too. Noise cancelling headphones are a great idea if your baby wakes easily (as modelled by Aurora in earlier photo!).
It goes without saying that you will have spare outfits for baby. Make sure you have extra clothes for yourself in your hand luggage near your feet. There’s nothing worse than having to sit covered in baby vomit for the entire of take off/landing plus then 30 minutes of turbulence because the seat belt seat is still on.
Sleep suits and onesies we’d recommend for flying plus a zip up fleece or dressing gown anything snuggly and easy to remove. Layers and press studs are your friends.
We’d recommend packing a cotton hat for your baby as airline air conditioning can be fierce. Surprisingly the vents seem to be above the bulk head seating so right near the bassinet.
If you’re on a long haul flight then a smaller change bag will be handier. We bought one that was a mat that folded out with room for 2 nappies, wipes and change of clothing. It fitted into the seat pocket so saved time and easy to grab in a rush.
Extra muslin cloths & baby carrier
Take the large ones as these are multi-functional serving as dribble wipers, blankets if baby gets chilly, a stand in change mat, sunshade or a scarf for mummy!
Pack a small sling or baby carrier in your carry on luggage as they are handy for airport transfers. Disembarking down plane steps safely especially if they are slippy without having to worry about holding a wriggly baby is priceless. Also they are helpful if your airline fails to deliver your stroller to the gate as promised.
If you are flying long haul and transferring on your journey then it might be worth investing in the use of an airport lounge. This can make a big difference when it comes to heating milk, food and changing your baby in a relaxed environment. Often lounge access isn’t too pricey either if you book in advance.
Some cabin crew will have the good sense to ask you if you’re travelling with another adult and if you’d like your meals to be staggered so you both get to eat by swapping baby duties. This is a great idea and why not ask if this is possible when you board the plane.
Hand sanitising gel or spray
These no water needed hand sanitisers are a god send when you are on an airplane and its difficult to access a toilet to clean up before food.
Toys, toys and lots of toys!
Again it goes without saying but the more you have for your little one to do the better. We had a set of toys and books easily accessible for on board the first plane. Then another set in our other carry on so we could swap them over for the second connecting flight so she wouldn’t get bored. The toys you can clip to a pram are best as you can attach them to the bassinet or airline seat belt so they don’t get lost under airline seats.
Finally I advise you to relax. Yes it sounds ridiculous to say this when you’re flying with a baby, possibly feeling totally stressed out like all evil eyes are on you the passenger from hell. Try your hardest to also make the journey as relaxing and as enjoyable for yourself. Your baby will pick up on your vibes so smile and see it as an adventure. Experience it through their eyes so the journey is exciting and new!
Sleeping like a baby what an ironic phrase considering most babies I know hardly sleep anyway I thought I’d write a little post about when you move your baby into their own room.
Moving baby into their own room
This is something most new parents worry about and then once they do it most say how much both they and their baby’s sleep improves. This was certainly the case with our first baby Violet. She actually started sleeping through occasionally once she was in her own bedroom away from daddy’s snoring.
Well now as a parent of loss I can tell you this is extremely difficult and no now she’s in her own room I don’t sleep better in fact my sleep is worse.
Number one I’d like to say to those people marketing webcams and tablets as being “just as good as a baby monitor”. They are no good for a parent of loss. The fact they repeatedly pause to reset or reload is a nightmare for a mother who subconsciously listens to her baby breathing through the monitor while she sleeps. When it stops to reload my subconscious triggers me to wake with a jolt. My brain telling me my baby has stopped breathing. This happened 10 times during the first night she spent in her own room. Add into that the three times she actually woke up too then I think I got approximately an hours sleep.
This amazing first night triggered the purchase of a proper baby monitor through amazon via same day delivery so night number two was better. Just a shame baby then had a cold so awoke 6 or 7 times in the night and awoke to start her day at 5am.
Here’s hoping it gets easier as we’re very tired parents but you know I don’t like to complain. I know I’d rather zero sleep than zero baby as I’d give anything to have my first baby Violet back.
My counsellor tells me it’s normal for a mother to be anxious and all mums have anxiety, to some extent. It’s just that most haven’t then experienced the worst scenario ever playing out in front of them. Most mums when someone tells them the odds of something happening to their child are really slim they can rationalise. They can’t then turn round to say well those odds have happened to me in the past. Unfortunately my experiences now compound my natural mummy anxiety especially at night.
How did you get on with moving your baby to their own room? When did you do it?
Love Sarah x
Always Violet Skies
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Now I’m no longer pregnant oh my word work and social events are a million times easier. Yes at a networking event, not looking pregnant, eventually someone will ask if you have kids but they won’t use the topic or babies as their opening line or icebreaker.
When you’re at a networking event, obviously pregnant, people you’ve just met will use the fact you’re carrying a baby as their ice breaker and ask you about it, which if you hadn’t lost children in the past and were enjoying a relatively worry free pregnancy then that might be lovely. However when you’re on your third pregnancy having lost your first child and then lost a second at 22 weeks gestation it’s a topic you don’t really want to chat to a total stranger about.
I avoided events
Lots of work contacts now I’m out and about again after baby have asked recently why they didn’t see me at lots of networking events, launch events, industry gatherings, conferences etc while I was pregnant and this is the main reason why. Yes sometimes I was genuinely busy or grieving but other times I really couldn’t face the fact I knew that strangers would ask me about my pregnancy with a big beaming smile on their faces. Clearly wrongly assuming I’m pregnant and so want to chat babies.
Knowing I’d have to answer the following questions over and over to at least three different people at events filled me with dread:
“How far gone are you?” “Oh so not long now. What’s your due date?”
Then either – “Oh I think you’ll be earlier than that as you’re huge much bigger than you should be” thanks for that I actually have more fluid than normal but I didn’t want to really tell you a total stranger that personal information.
“Oh really but you’re so small. Have you had a sizing scan?” Yes I have actually I’m having scans every two weeks at the Tommy’s clinic but again I don’t really want to go into this with a complete stranger. “Oh what’s the Tommy’s clinic you say?”…
I’ve seriously had both of these opposing size comments at the same event!
Or they ask…
“Is it your first baby?” No my third.
“Oh you’ll be an expert then. Glutton for punishment bet you’ll have your hands full then. What other kids do you have?
Are they excited about their new sibling?” Ah no they aren’t alive unfortunately now that kills a networking event.
Or they say…
“Do you know what you’re having? Is that what you wanted? Are you excited about it?”
“Looking forward to the birth then?” “Baby will definitely take you by surprise by being really early.” Thanks for that I’m having a planned C Section so I hope not but again I don’t really want to go into that with a total stranger.
So folks next time you’re at a social event or networking for business and you see a pregnant lady perhaps instead you’d like to simply pay her a compliment and not think you can use her pregnancy as an icebreaker to ask personal questions or as an excuse to fondle her stomach unnecessarily. Yes strangers seem to think your stomach is suddenly fair game for a good old fondle!
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.
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!).
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.
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.
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.
Sarah – Violet Skies
Have you read these other posts about Rainbow babies?
A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change. We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.
The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.
For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages. The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.
Leonardo Di Vinci
This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing. I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too. He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.
Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s. What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.
Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans. They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.
All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time. I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news. Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death. So to say I was skeptical about what “experts” told me was an understatement but you know what? The Tommy’s experts or as I like to call them Angels were right!
So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh. The last time they had seen her she was on a black and white screen during ultra sound scans. It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.
Tommy’s is a charity
Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.
Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead. Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?
Also make sure you visit the Leonardo Da Vinci exhibition more details click here.
When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”. Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.
It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.
Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!
Success measured in pounds
This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”. Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.
You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.
We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.
Sick baby is a challenge
Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones. And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.
To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,
Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too. I am a mother of three not one.
The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.
In a way this is probably also now the reason why both departments are now OTT with our care.
Are you sure you’re ok?
Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time. Although I’m led to believe this also happens often when you have multiple children who are alive too.
Anyway got to dash baby waking for a feed…thanks for reading.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!).
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.