Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy. Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath. If he had he would technically have been alive.
TFMR
He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post). We knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision. We still wondered and worried as to whether we were right.
Already grieving
We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother. We entered a period of darkness even darker than we could imagine. The little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur. A few months later we got the surprise news of another pregnancy. A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.
Aurora
Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.
Aurora at 3 weeks old.
We named her Aurora as it means “Goddess of the Dawn” and “Light”. We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.
Arthur
Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.
He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital. We set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here. There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.
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.
Midwives
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.
Me (tired & make up free but happy) with Aurora
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.
For years I have heard close friends and family talk about how they feel like fraudulent mummies because they had caesarean sections instead of natural births.
Birthing pressure
Other friends have spoken about the pressure to have done natural child birth, without pain relief. It’s as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.
Bullsh*t
I felt I needed to write this blog post about the pure bullshit (yes that’s the language I’m choosing to use) of this whole belief system. I’m someone who became a mother as a result of the most painful natural birth, I’ve delivered a sleeping baby early naturally and I’ve also had an elective Caesarean section too. I can say from experience that all of these make me equally a mother. Each of these experiences posed their own challenges, unique type of pain and suffering (both during and afterwards, both emotional and physical pain).
My Natural Birth
My “natural” birth was undiagnosed breach during which I had no pain relief and both myself and my daughter nearly died. Now this experience, to some women I’ve spoken to at various baby groups, is lauded as making me a “super woman”. Three years ago in the baby class tales of who had had the worst birth experience meant I usually “won” that one hands down.
I remember one woman at a baby group proudly stating she also had a breach birth naturally and when offered a C-section, instead opted for a no pain relief natural experience. She said she was proud she’d done it. What utter nonsense? As someone who has experienced it and without pain relief, I can hand on heart say I really wish I hadn’t have been through it at all.
Baby Aurora a few hours old last week
A woman’s choice
Yes it is important for women to be able to have a choice in the birth process and for them to be able to have a say in their experience but at the end of the day the priority must always be the health of mother and her baby or babies. Whatever is best for the patients should be what happens. For women to then wear their “experience” as a badge of honour, that they can use to bash other mums with (as if new mums don’t already have enough to feel guilty about!) is I think total and complete bollocks.
I’ve had people say to me, that they wish they’d have had the birth experience I had, instead of the C-section they actually did have. As someone whose physical wounds and emotional ones still haven’t healed from my original birth trauma. I’ve had to say “ermmm no you really don’t want to have experienced what I did”.
Caesarean Section
So why is a C-section seen as the easy option or the cheats way? As someone who has now also experienced a Caesarean section with my latest pregnancy (actually last week!) I can say it’s certainly not the super easy and pain free alternative that it is lauded as. Those women I was in hospital with who had natural births are already out and about with their babies in slings. Pushing them in prams and lifting car seats into their cars to take baby for a drive.
I can’t do any of that yet because of the wound that still needs to heal across my tummy and I’m limited to what I can lift, stretch to reach and physically do. I’m also on strong painkillers for the pain following the major operation, as that is what a Caesarean section is, a major operation! Natural childbirth might be more painful at the time of birth but post birth C-section pain and discomfort wins hands down unless you of course have complications such as tears, prolapse, piles, etc.
Tales of war
Women at baby groups talk about their natural birth experiences in the same way we probably chatted about hunting trips and warfare as cave people. The stories seem to become more elaborate and embellished as they are repeated with some women seeming to get pleasure from reliving all the horrendous little details wanting to out shock or out gore the person before. There seems to be an element of competition about the whole thing trying to see who has had the worst experience.
Why aren’t scars celebrated?
If women talk about their experiences with such great delight then why aren’t the genuine battle scars, including C-section scars, stretch marks & saggy boobs also celebrated by society and why are women made to feel bad about them? Should they not be championed as battle scars and showcased alongside the tales of woe?
Too posh to push?
Why are some women also made to feel bad for having C-sections by men too? Some men when I was pregnant and they heard I was having a planned c section actually joked “too posh to push hey?” With even women giving each other a hard time over childbirth what hope do we have for men to then react appropriately?
Do you feel bad about your childbirth experience? Have others made you feel guilty about it? Have you decided to change things with any future children?
Tiny hands
Can we just celebrate motherhood?
I feel we have a long way to go when discussing childbirth but it is about time we simply celebrate motherhood no matter how our babies arrived into the world and we should celebrate all types of motherhood too, including those whose babies don’t quite go or arrive as planned. It’s important to talk about child loss too and alternative experiences.
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.
I’m now heavily pregnant so that means that strangers and anyone I meet can tell instantly that I am with child, which is fine I’m happy to talk about it.
Is it your first?
The difficulty comes when they ask if it is my first pregnancy and I have a policy of always telling the truth so when I say it is my third. I get comments like “wow you’ve got your hands full then”, “you must really know what you’re doing”, “you’re a glutton for punishment” and “are your other two excited about their little brother or sister”.
A photo I took of a mother with her two children paddling in the sea in Morocco
Try to move conversation on
Often I let them make a comment and then I move the conversation on without having to tell them that neither of this baby’s siblings are alive. Occasionally the person I’m talking to will bring the conversation back around again by asking what my existing two children are? Are they boys or girls? Then I have to explain that they were one of each but unfortunately they are no longer with us. I’m sure they would have been excited to have a little brother or sister.
What happened to your first two?
They then usually ask me what happened to my first two children and I tell them honestly or they nervously say “I’m so sorry” to which I answer “it’s ok” when clearly it isn’t then the conversation moves on.
Third time lucky?
People often tell me “oh hopefully this one will be third time lucky then” and I know this comes from a very good place filled with love. I know we were very unlucky to have had the situation with Arthur but I don’t feel we were unlucky to have had Violet. I know we were extremely fortunate to have known such a special little person if only for 15 months. We were very unlucky to have lost her but would happily repeat the time over again and again in the style of Groundhog day if we could – well maybe not the very last 6 hours or 10 days in hospital!
Here’s Violet having a showdown of attitude with her bigger cousin Evelyn. Sometimes I wonder what she’d have been like as a sister.
It makes being pregnant bittersweet and we are simply hoping this time to have a stress free birth experience too, as with Violet bless her we certainly had a lot of drama.
This was the best kept secret, until recently, as anyone can testify if they have bumped into me. At 34 weeks pregnant with my third pregnancy I’m now pretty big.
Not very honest
Those of you who regularly read my blog you will know that I like to write in a very honest and frank way. I apologise if I haven’t been forthcoming about this massive development in my life. I hope that after reading this post you can understand why.
Third pregnancy
We were lucky enough to fall pregnant again with our second rainbow pretty soon after the loss of our baby Arthur. Unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother. We wouldn’t know if it had these issues until the 20 week scan. So we would have to wait 5 months until we knew if our pregnancy would be viable or not.
The scans
In the meantime we were of course offered additional scans so we had one at 7 weeks, 12 weeks and another at 16 weeks where they checked baby’s heart. At the 16-week check we discovered that unlike Violet’s heart the new baby’s heart was perfectly formed. We had received this news about Arthur’s heart at 16-weeks too. So although it was good news we weren’t celebrating yet.
Baby at 12 week scan
Arthur’s scan
I remember after our 16-week scan with Arthur we had been so happy that his heart was ok. We felt so lucky, relieved and excited we told friends and family we were pregnant. Everyone of course was delighted for us, especially after the loss of Violet. Then after Arthur’s 20-week scan we got the devastating news about his severe brain condition and our entire world collapsed.
Kept this one quiet
For this very reason we refrained from telling our close friends about the new pregnancy until after our 20 week scan. This scan turned out to be the very first 20 week scan we have ever had that hasn’t resulted in us being pulled into a separate room. To be spoken to by specialists and midwife counsellors. The first 20-week scan we have had that hasn’t resulted in us having to have a second follow up scan with a more senior specialist a week later.
So when the two specialists that performed our 20-week scan told us the baby was perfectly healthy we didn’t know what to say. We were in total shock. We were asked if we had any questions and all we could think of was “what do we do now?” We were told we could leave and come back for another scan with a specialist at 28 weeks.
Baby at 20 weeks refusing to have a photo taken turning away!
A mistake?
Since then we have been waiting for a phone call or letter from the hospital to say that they are sorry but they have made a mistake. We had the second specialist scan at 28 weeks and again we prepared ourselves for the knock out punch. That didn’t come, again we were given positive news. To anyone reading this we must sound ungrateful. We were just so used to being given bad news whether it was devastating or minor bad news that we almost couldn’t believe what we were hearing.
More scans
We currently have a minimum of one baby or pregnancy related appointment each week. Either to monitor my heart (as I have an ASD see my post about a broken heart). To check baby’s growth (the amazing Tommy’s clinic gives us a scan every 3 weeks). Child loss counseling or midwife appointments. I’m under so many different departments and teams that we have gone from having an horrendous level of obstetric care when we had Violet to now having lots of specialists who all know who we are and will give us priority level care. The NHS now feels like it is working for us!
With my sister at the baby shower she & my sister-in-law kindly organised for me
Trying to be hopeful
I’ve recently been to a few different Manchester events and I’ve bumped into so many people now that I think most know about our impending arrival. People constantly ask me whether I’m excited about the new baby. The truthful answer is simply that I will be relieved when baby is here safe and well, when I can see with my own eyes. Until then I can only try to be hopeful for the future.
Last week was a hard week for us as it was our daughter’s third birthday. Along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.
First 10 days in hospitals
This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital. In Liverpool she had open-heart surgery at just 4 days old.
We had to sign a million legal forms and contracts saying we knew the odds were stacked against her. That we knew she might not survive and return alive from the operating theatre. And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”. We also knew her chance of survival without the operation was nil. She was only alive because of the additional hormones and support she was being given.
Off for heart surgery at 4 days old
I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit. We didn’t want her to be alone without at least one of us. I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could I was discharged to head over to Liverpool.
The second time I held her just before her heart operation
We told her about exciting plans
The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital. We chatted about all the different people she would meet, describing friends and family members to her in detail. We spoke about all the places we would take her to including New Zealand to see her Uncle Tom. Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon. We chatted about her Grandma and Nanna. Said she would learn to swim.
We basically described to her then the life she ended up having crammed into a 15-month period. I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!
Violet in Cyprus in April 2016
The journey to operating theatre
When they took her down to the operating theatre I couldn’t watch. I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing. Her brave daddy on the other hand walked her down to the operating theatre. Talking calming to her the whole time reassuring her. Reminding her how much she was loved. How strong she was and that she could do this.
The bond between father & daughter was strong from day one
Then we waited for an eternity
Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call. We finally received it saying she was out and still alive! We were so relieved but our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her. We thought oh no this is where we get told something bad has happened. We were told the opposite that the surgeon thought it was an 100% success. He felt she wouldn’t need any other operations on that part of her heart again ever.
You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix. This is the reason we are fundraising in her name for Alder Hey. So superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.
Now it feels like a story
Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.
Thoughts of ordinary things
The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it. Buying her gifts, cards and organizing a birthday party for her. Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.
Here she’s opening first birthday presents & getting excited about bows!
Party and gift planning
This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old.
Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets. Then on her birthday we distributed them all around the area where we live. Including taking some to her nursery. Leaving some on the benches near the playgrounds in the local parks where she loved the swings. We left some near the mural on Beech Road that has a violet coloured balloon in her memory. Some near to where she attended Babel Baby classes. We placed some on benches in the cemetery close to her grave, after we took her birthday balloons.
The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.
Whilst I was sat on a train heading to Glasgow earlier this week I decided to write a few blog posts touching on subjects people have been curious about.
How do you cope with losing a child?
People often ask me about how we coped with losing Violet and about the techniques we employed to try to help ourselves get through this time.
Force yourself to do things
We tried to remember what we enjoyed about life when our daughter was still with us. We focused on making ourselves do these things even though we didn’t want to and certainly didn’t have the motivation.
It all began with us still going on a mini-break to the Lake District only a few weeks after she had died. A break we had already planned and paid for when our daughter was still alive. That trip was an extremely hard one for us and we only stayed there for the bare minimum of time.
We also had lunch at L’Enclume that I had arranged as a belated birthday surprise for my hubby months earlier. We just went through the motions and returned home early on the final day as we felt lost.
Cartmel, Lake District
What did you enjoy before?
The things we had enjoyed doing as a family trio were travel. Violet was a true jetsetter and travelled more in her short life then many adults do in theirs. We also liked dining out in new places.
Admittedly the fondness for dining out was more mine and my hubby’s as Violet disliked food although she did enjoy people watching. She was always good as gold too preferring to use high chairs to rest her books on for reading. She often got praised by staff for how clean and well behaved she was.
I work in travel and hospitality PR so my work has always channeled my passion but I felt as though this love had disappeared with Violet.
Violet watching the Snoopy film on the flight to New Zealand at 7 months old
After the initial Lake District trip we continued to make sure we planned and booked other things in advance. Then we had less chance of being able to back out and change our minds at the last minute. Don’t get me wrong there were quite a few dinner reservations we made and then couldn’t be bothered going to. Or arrangements with friends we had to back out of as we simply couldn’t face it.
Remember to mark anniversaries
We jointly decided that we should focus on ensuring, despite our misery, that we booked restaurants or mini-breaks for anniversaries and birthdays. We encouraged each other to make an effort to keep the reservation. We often found that only one of us would wobble and want to back out of plans. So we worked as a team to persuade each other knowing that it was for the best in the long run.
Book things in advance
We planned trips to places we had already wanted to visit but only for a few days at a time. We knew a big trip would be too much for us. Places like Florence in Italy for Valentine’s day. Bilbao in Spain to visit the Guggenheim. Montenegro to escape for Violet’s anniversary. Morocco to escape Arthur’s due date etc.
Sunset in Bilbao, Spain
Slowly but surely after nearly 2 years I can now talk again about travel being a passion of mine without instantly feeling guilty about it. Now I realise that this was also a passion of my daughters and something she would still relish if she was alive today. I also embraced a new hobby for photography, especially landscape and architecture. All the photos in this blog are mine.
Always a work in progress
I’ve not yet gotten there with the dining out thing. I’m still fond of food and work in hospitality however we don’t dine out as a couple anywhere near as much as we used to. I know in time we will and this will be easier too.
To the “friend” that said to us after Violet died “well at least you can now travel whenever you like and dine out whenever you like”. Well we did travel and dine whenever we liked with Violet. She loved it and we can nearly do this again without pangs of guilt and imagining what she’d have thought of it/been like in these places. Every day is tough. It’s not as easy as “at least you don’t have to arrange a babysitter” that we’re constantly told by people.
Hang in there with everything in life some things take practice.
Everyone talks about “rainbow” pregnancies and what a blessing they are.
Joy of a rainbow
It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life. We had hope for our future, as a family and truly believed the sun was shining on us again.
Optimism for future
Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok. We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.
Finally announced our pregnancy
We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting. That in January 2018 Violet was going to be a big sister.
Bad news at 20 weeks
Then we had the 20-week scan. Arthur’s heart did still look ok but what didn’t look right was his brain. The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist. Our world crumbled. We then had to wait over a week before we could see a specialist to get more details.
Heart broken again
We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain? The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.
You can’t repair a brain
When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan. The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain.
His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die. His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.
TFMR
We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy. Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear.
Having to give birth to him was traumatic and extremely upsetting. We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair. We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.
Guilt mixed with grief
We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too. In a way this makes it easier as we have constant beautiful reminders of our memories of Violet. I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.
The world can be cruel
Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway. Never been able to breathe or swallow unaided if he had survived to full term. It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear. I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.
After the rainbow
People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again. I’m often asked why I don’t believe in God and this is the reason why.
Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?
We look for the next one I guess and try to keep positive.
