We’re here for you, your partner and family if you...
... are making decisions before, during or after antenatal tests have been given a worrying result from an antenatal screening or diagnostic test have been told your baby has a fetal anomaly
... have to make a difficult decision about continuing or ending your pregnancy have made a decision following antenatal testing and would like ongoing support
Want to talk? Call our helpline on 020 7713 7486
We hope this newsletter finds you all well, and enjoying a few moments of sunshine this summer.
I want to start with praise for those who have fundraised for ARC this year. Achievements include the London Marathon in April, which raised over £15,000, as well as those competing in the Hackney Half, the London Landmarks Half Marathon and the Edinburgh Marathon (see page 16 and 17 for more on these marvellous athletes!) Thank you to everyone, and do get in touch with Rebecca (rebecca@arc-uk.org) if you’d like to raise money for us, whether that be through a sporting, community or work fundraiser. We truly appreciate the time and effort each one of you put into supporting our services, as well as our regular donors’ essential contributions – more on where your money goes here.
We’re now over halfway through 2024, and our team are as busy as ever supporting parents around the UK. Between April and June, we answered helpline calls, emails, texts and Live Chat requests from over 1,300 parents, held impactful bereaved parent meetings in Manchester and Birmingham and delivered 19 in-person and online training sessions and talks to professionals. We’re also planning for our conference for professionals in antenatal care this October.
A key priority, after listening to feedback from parents, is extending our reach to ensure that we are a truly national, accessible and inclusive service. Recently we have added extra translations of our main publications for parents online and are pleased to offer audio versions of these publications online too (find out more on page 18). We have welcomed our first Support Network Volunteer based in Northern Ireland: ARC volunteers are bereaved parents some time on from their own TFMR who have been trained to provide support to more recently bereaved parents, usually by telephone and email. We are now working on producing short films to help introduce our services, and explore the most commonly-requested topics (like raised nuchal measurements and decision-making following a test or scan) from parents to go onto our website.
Our Director Jane and Coordinator Jenny are finalising a set of parent-centred guidelines for care after antenatal diagnosis that has been put together by a group of clinical experts co-ordinated by ARC. Our aim is to improve consistency of care across the country when parents get the news that their baby is not developing as expected.
And finally, we are delighted to welcome two new ARC trustees: Guz Ali (Manchester-based) and Brenda Naluyima (Hertfordshire) who will bring their NHS England and communications expertise to our board.
I hope that the next few months are kind to you all.
Kate
You may have seen recently on our social channels that Jane received an Honorary Fellowship from the Royal College of Obstetricians and Gynaecologists (RCOG). This prestigious recognition honours her dedication and achievements in the development of women’s healthcare. We could not think of anyone more deserving!
Sally hopes to arrange bereaved parent meetings in Bristol and Southampton later this year. Once the dates are finalised, we will share them on our social channels and email members who live in the area/surrounding areas. If anyone has recommendations for counsellors and therapists they have found helpful, please get in touch with Sally (sally@arc-uk.org).
Rebecca has been working with Katy to produce a new ‘Impact’ page on the ARC website. You can take a look here: https://www.arc-uk.org/aboutus/impact-studies-professionalsvolunteers-staff/. She continues to work on improving our social media channels and general digital communications. We are always looking for parent stories to share on our website or in our newsletter, if you would like to share yours please get in touch with Rebecca (rebecca@arc-uk.org).
Hannah M is developing a survey about TFMR care. We will be launching it UK-wide later this year and hope many of you will be willing to share your experiences. During her office days, she continues to answer helpline calls, providing information and support to expectant and bereaved parents.
Hannah C has been doing a lot of travelling this month, delivering training all around England including Sunderland, Sutton Coldfield and Norwich. This is part of our renewed commitment to reach areas that haven’t previously received ARC training, improving care country-wide.
Jenny delivered several training sessions for healthcare professionals and students this spring and also attended the British Maternal & Fetal Medicine Society conference in April with other members of the ARC team. Led by ARC and in
collaboration with a group of experts, Jane and Jenny have been involved in the development of a set of professional guidelines to help ensure that all parents can expect the same high quality of care after an antenatal diagnosis. “Parentcentred Guidelines for Care After Diagnosis of an NHS FASP Condition” is scheduled for publication this summer.
Miranda is working closely with the Head of Programme at Antenatal Screening Wales to deliver training days on delivering difficult news and providing the best care to all 7 health boards. She attended the Antenatal Screening Wales’ Down’s syndrome, Edwards’ syndrome & Patau’s syndrome and Fetal Anomaly Advisory Group and advocates for continued development for healthcare professionals and to ensure best care for women and couples undergoing high chance screening results and a diagnosis of a fetal anomaly. She will be delivering lectures to student midwives at Swansea University and the University of South Wales in the next few weeks.
Karen continues to provide training sessions to health professionals across Scotland, both in person and online and continues to work with the NBCP Core Group in providing Learning Events for health professionals working to embed the TOPFA bereavement pathway into their workplace. She also recently accompanied Jane to provide training to health professionals in Northern Ireland. Karen is also currently a member of the Scottish Pregnancy
Trisomy and Ultrasound Screening Standard Development Group and the Scottish NIPT Evaluation Group. She continues to provide peer support groups in both the Glasgow and Lothian areas for bereaved parents.
Katy is working on projects to increase partnerships and expand ARC’s reach to all UK hospitals and is also helping to organise our upcoming healthcare professional conference. We now have workplace guidance and training for both parents returning to work following a bereavement, and colleagues and management wishing to best support them. If you would like us to advise your workplace on compassionate leave policies, or speak to your management about running ‘Sensitive Communications’ training for colleagues (or indeed if you would like to fundraise for ARC!) please do contact Katy (katy@arc-uk.org).
Suzie is currently on maternity leave, after welcoming her baby girl into the world in May. We wish her all the best and look forward to providing NI updates when she returns.
Barbara continues to provide excellent financial administration and bookkeeping. She has also been helping out with sending ‘welcome packs’ to fetal medicine units and antenatal clinics, helping ensure that eventually, all hospitals have our details to pass on to expectant and bereaved parents who need us.
We lost our son Rowan to Autosomal Recessive Polycystic Kidney Disease (ARPKD) in July 2023. You can read his story under ‘Continuing a pregnancy after a diagnosis’ on the ARC website.
I found trying to conceive after loss so stressful and heart breaking every month it hadn’t happened. We felt so cheated that we hadn’t been able to bring our baby home. When I became pregnant again, I was so excited. There was more anxiety, as to be expected with a pregnancy after loss, but we’d been told it was very unlikely the same thing would happen again, so I tried to be positive.
I knew we still didn’t have the full genetic results from Rowan, but I was convinced they wouldn’t find anything as we had no family history of kidney disease. We went for an early reassurance scan at 8 weeks and were excited to see a little blob with a heartbeat, measuring exactly as they should.
Soon after, I got the phone call from genetics to say they had found that Rowan had ARPKD and that it was likely at least one of us was a carrier of a PKD gene variant. They explained that if both of us were carriers, there was a 1 in 4 chance of it happening again. It was heart breaking. I honestly never thought we’d go through the same thing again.
We both had blood tests which confirmed we were both carriers. I had my 12-week scan which was fine and I remember thinking how in any other normal pregnancy we would be planning our announcement around this time.
We booked an appointment with the consultant to have a CVS to find out if our baby had ARPKD. The procedure was fine, and the consultant did a detailed scan of our baby and confirmed they looked healthy. We loved seeing our tiny baby wriggling around on the screen and collected as many scan photos as we could.
We were told the results of the CVS would take 5-6 days but there was a bank holiday weekend, so they took longer. We were on holiday when we got the first set of chromosomal results. They were fine and revealed that we were having a girl! We were super excited to begin with but by the next day the reality hit that we might not get to keep her.
I bought a pink bunny toy and a little sister baby grow. Even though I knew we might not bring her home, I wanted to buy something pink. I was also very much aware that if the worst did happen, I’d want to have things for a memory box. It was strange, being pregnant after loss, I bought a few bits knowing very well they might never be used.
12 days after the CVS we had the phone call with the results. Our daughter had inherited both of our PKD gene variants. I knew she was extremely unlikely to survive and remembered how difficult it was being pregnant with Rowan for the last 8 weeks knowing he wouldn’t survive. I couldn’t go through another 25+weeks of being pregnant with that uncertainty... Not knowing how long she would live. We made the heart-breaking decision not to continue the pregnancy. It’s a decision we never wanted to make. She was so wanted and is so loved.
On the morning before the appointment to have the first dose of medication, I questioned so much about our decision. I desperately searched the internet for stories of babies with the same diagnosis and some of them looked hopeful. But I couldn’t find anything the same as ours and of the stories where babies had survived, it had been diagnosed much later, mostly after birth, and they still needed transplants and numerous hospital stays. I knew deep down that not continuing the pregnancy was the right decision for us as a family,
but it was the hardest decision I have ever had to make. When I went in for the appointment that afternoon, we were reassured this was the right decision to make, which was comforting to hear.
I went back two days later for the next dose of medication and to deliver our daughter. Rosie Rowan Thornton was born at 12.40pm on Saturday 13th April 2024. I’d previously searched for images of 15-week foetuses so that I would be prepared for how she may look, but as soon as I saw her, I just felt love. I thought she was beautiful. She had the tiniest, most perfect hands and feet. She weighed 64g and was 14cm long. We weren’t sure if we would be able to get hand and footprints as she was so fragile, but the nurse was able to do them for us and we are so grateful for that.
TFMR is such a difficult thing to talk about. There is the fear of judgement that we chose to end our daughter’s life. But it is not a choice that anyone ever wants to have to make. I chose to continue a pregnancy after diagnosis with Rowan and chose not to continue a pregnancy after diagnosis with Rosie, and neither decision was easier than another, but both were the right decisions for us.
I think about my babies every day, but I try to appreciate how extremely lucky we are to have had an uncomplicated pregnancy with our first son Archie and how lucky we are to have him. So many others go through multiple losses without knowing if they’ll ever have a child. Even so, I live in hope that one day Archie will have a sibling he can play with, rather than just visit at the cemetery.
s there any chance you are not as far along as you think?’
These words spoken by our sonographer at our 20-week scan was the start of the end of our baby girl’s life. I’d had a fairly easy pregnancy up until this point, besides some bleeding in my first trimester. We’d had several scans before this, as we had done a private one and ended up with a few attempts of the 12-week scan as baby was always in a bad position. Each time we saw a strong heartbeat and was told everything looked normal. As soon as the sonographer started scanning, he asked us this question. He explained that some measurements he was taking were as far as 4 weeks behind expected. We were referred to fetal medicine and booked for another scan on Monday. We spent the weekend trying to be positive, telling ourselves it was something we could fix with treatment or medicine, even though realistically we knew that there must be a serious problem.
Monday came and we had another scan with the consultant. This time she also spent a lot of time on the heart. We were told that baby was very small and would not catch up, and that there was a heart issue. It was at this appointment that I knew we were never going to bring our baby home. We were then referred to a specialist fetal medicine consultant for further scans and tests. After another agonising couple of days waiting for the appointment, a further scan revealed not only the growth and heart issues, but also that a part of the brain had not developed as expected. The same day we found out how poorly she was the day we found out she was a little girl. We had to make the most heartbreaking decision any parent could face. An amniocentesis revealed that she had Triploidy, a fatal chromosomal condition. Once we knew that she would never live outside of my womb, or would only live a matter of minutes or hours, we knew we had to make sure she would never suffer. The decision and the procedure to stop
her heart was harrowing beyond belief and will haunt me for the rest of my life. She was so wanted and is so loved. Her name is Birdie.
Birdie was born at 22 weeks after 12 hours of labour and was completely perfect. We spent a lot of time with her in the days that followed her birth before her funeral, just in awe of this tiny beautiful baby we had created. The midwives made this time something we never thought it could be. We were congratulated on a beautiful baby, almost as though she wasn’t dead, and that helped us so much. Saying goodbye to her was one of the hardest parts, which I felt happened in two steps. The first was deciding that we would stop visiting her at the funeral home, so this was the last time we would see her and hold her. It took us so long to actually walk out of the door. And then it was the funeral which was later. Walking away from her little casket took everything I had.
She will always be our first born and we will spend our lives honouring her. I look forward to hopefully telling her siblings about her one day, and I know whoever they are, they were sent to us by her.
We are looking forward to welcoming delegates in October to our face-toface conference for healthcare professionals, ‘Diagnosis and Decisions – optimal care through antenatal testing and its consequences’.
This will be held on Friday 4th October 2024 at the Hallam Conference Centre in London.
Just £10 for professionals, this conference is a key opportunity to hear from world-renowned experts on the latest developments in antenatal screening and diagnosis. We will also explore the parent perspective and discuss how we might ensure the highest quality care when tests bring unforeseen or difficult news. To find out more, including the full programme, visit our website here: https://www.arc-uk.org/for-professionals/arc-national-conference/
ARC STAFF AND TRUSTEES INVITE YOU TO OUR INFORMATION AND SUPPORT DAY IN CENTRAL LONDON ON SATURDAY 9TH NOVEMBER 2024.
“It felt like a huge relief being in a room full of people who understood exactly what we’ve been through. Even if we didn’t talk to every single person individually, the support for each other I thought was palpable. Thank you so much for providing invaluable support to us.’’
Attendee 2023
We will have an ‘expert panel’ of parent friendly speakers to answer your questions followed by a talk from an experienced psychotherapist. We then have a relaxed lunch together. In the afternoon you will be able to join one of our small facilitated workshops that cover topics such as: coping with the loss of your baby; another pregnancy following a loss; issues for those less recently bereaved, and a group dealing with the partner’s perspective on the loss of a baby.
The day will start at 10am with tea, coffee and refreshments and end by 4pm. The cost to attend is £5 per person.
This year, for the first time, we will have an option to join our support day virtually. Members outside of London will be prioritised for these places, on a first come first serve basis. We are able to have up to 50 people join virtually for the talks in the morning, and 20 people join our virtual workshop in the afternoon that will be facilitated by two ARC staff.
We will send out more information and a booking form in September, but for now save the date if you would like to attend!
Let’s try and leave the house
Blinded by daylight
My head suddenly feels dizzy
The mode is fight or flight
Babies and prams everywhere
Children are running free
The only person childless here
Appeared to be me
We go to the market
There’s a ‘pregnancy candle’
Since when did these exist
This is too much to handle
I hear a baby
They start to cry
The tears are suddenly mine
Yet nobody knows why
We rush back to the car
Feeling sadness and fear
That should have been my baby
He should be here.
Jennifer completed 100km in May for ARC, and continues to fundraise for us. Her current total is £294 in memory of Leo.
Jennifer wrote:
‘‘...we took him (Leo bear) on a walk and picnic with us to commence the May challenge on Leo’s due date. It was a lovely day; we saw an L shape in the sky by two planes going by and then later a big X. I always look for signs from Leo but during my walks I saw lots of Robins and Feathers. It felt great to get to the end of the rewarding challenge for our boy and to continue to raise funds for this massively important charity.’’
Thank you so much Jennifer!
Our wonderful 2024 London Marathon team consisted of Carrie, Charlotte, Elena, Matt, Natalie, Pete, Richard, Sophie and Victoria, and Harry who took part in the Mini London Marathon.
We want to thank all our runners for their dedication and their generous friends and family who donated so much to ARC. Over £15,000 was raised in total!
Well what can I say…. For as long as I can remember I have dreamed of running the London Marathon! This year I applied for my special chosen charity Antenatal Results & Choices (ARC) every single person who sponsored me, offered support & helped me raise funds has made my dream come true. I truly thank you from the bottom of my heart, you are all amazing, kind & so generous! Together WE raised £2420!!!
You altogether have made a massive difference to all those expectant parents of the future! You have all provided the one thing we should only ever wish for which is….HOPE.
I’m not sure why my desire was to run 26.2 miles but in reality, I think I do know…. See throughout life our minds can play tricks on us, they can make you believe the impossible is impossible, that we just aren’t good enough & what we set out to achieve was just some crazy fantasy!
At some point during a marathon & everyday life this happens and the only thing to do is to prove our minds wrong! All we must do is look around us and notice anything positive no matter how small, and although at sometimes our vision can be clouded something will always be there, I promise you.
Life isn’t always going to be easy there will be good days & sad days! But in reality, we can survive all those days! We are more
than just a bad day, or week, or month or even decade! So to all my parents, family & friends you will survive whatever you are going through, you are all a future of endless possibilities!
I’m so proud to have run for ARC! Always be the change you wish to see in the world!
Forever grateful.
Although my London Marathon race itself was a bit compromised due to messed up training with illness and injury, the experience itself was amazing. The amount of support out on the course was immense, you never went more than a hundred metres without someone cheering you on and shouting your name. I was very proud to run for ARC and raise a bit of money for them, following their generous assistance during my partner’s pregnancies.”
It was very special and a real honour for both my husband and I to run the London Marathon to raise both money and awareness for ARC. Running has always offered some peace and time for contemplation and so running 26.2 miles in our home city in memory of our little boy was something we’ll never forget. We are very grateful for all of the generous donations we received for such an important worthy cause.
Thanks ARC for giving us this opportunity and for being there for many parents who find themselves in difficult circumstances.
We started trying for our first child, and fell pregnant almost immediately. We were over the moon, and started talking about all the things we wanted to do when our baby arrived.
In those first weeks of pregnancy, it felt like time had slowed down. I was counting down the days until our 12-week scan when we would get to see our baby, and subsequently get to tell everyone our wonderful news. Finally, the day arrived, and we saw our baby on the screen and heard their heartbeat – it all suddenly felt so real, particularly for my husband who hadn’t been experiencing the physical changes like I had up to that point. But then the hard news came, the screening had identified our baby as being high risk for T21, a risk they put at 1 in 122. At this point, it felt like the odds were still on our side; yes it was high risk, but less than 1% chance didn’t sound too bad.
Still feeling positive at this point, we wanted answers as soon as possible, so paid for a private NIPT the next day, promising results within 2 days. While at the time it sounded great to have answers so quickly, it meant we unknowingly bypassed a consultation with the screening midwife who would have explained the test and its potential results to us before undergoing the test. When our NIPT test came back as high risk, neither of us knew what that actually meant and the private clinic didn’t provide any information. After much internet searching, our situation slowly dawned on us, that there was a >99% chance that our baby had T21.
We contacted our hospital who scheduled an appointment with the screening midwife, who explained that they could perform a diagnostic
test, and sent us to a nearby hospital for a CVS procedure that same day. I was incredibly nervous about the procedure because I’m not good with needles, but the doctor was great, and I barely felt it. The doctor explained that if this test did not confirm a diagnosis of T21, there was likely something else severely wrong with our baby causing the previous high-risk tests. Knowing there was no good outcome from the test, we found seeing our baby on the scan and hearing its heartbeat the hardest part – just a week before, this view had brought us both so much joy, whereas on this day it broke our hearts.
When the midwife called with the results a few days later, we started talking about our options for TFMR. For us, it felt like a decision with no real choice about it. We spent a while reading about the prognosis for a baby with T21 and learnt about the increased risk of heart defects, gastrointestinal abnormalities, leukaemia and early dementia, in addition to developmental disabilities. We were lucky that my husband and I came to the same conclusion, but to this day I fear telling people the details of our experience, because there is so much stigma attached.
As I was 13+5 weeks, surgical termination was not an option at our hospital, and we were told to contact BPAS. I feared how long the wait would be if going down that route - I was grieving without fully experiencing the loss, and we just wanted to move forwards. So, we selected medical termination, and I was seen the next day to take mifepristone. I was admitted to hospital the day after (at 14 weeks). I didn’t know what to expect with this procedure and looking back I wish they had given me more information about how my stay in hospital would go. For example,
I was shocked to find out that I would only be allowed to use the commode in our room (lacking any curtain or privacy screen), once the misoprostol had been administered.
About 40 minutes after the misoprostol tablets were inserted, the pain started, and I immediately requested some pain relief. Unfortunately, the oral morphine they gave me caused me to vomit (apparently a common side effect, that I was unaware of) and the doctor couldn’t prescribe anything else until a safe time had passed, so I found the procedure incredibly painful. The foetus was born about 5 hours later, but the placenta remained inside, so I took three more doses of misoprostol tablets, 3 hours apart, until they decided that it would be best to take me to theatre to remove the placenta under general anaesthetic.
For the next two weeks I had some light bleeding, but physically recovered quickly. The mental recovery, on the other hand, will be an ongoing process. We chose not to find out the sex of the baby, see the baby, give them a name, or to remember the date of the termination. While some people have not understood this decision, it was the only way we could cope with what had happened. I try to see it as a loss of what could have been, rather than the loss of a person.
It is heartbreaking what happened, but it has brought us closer, and we see it as a false start to what will hopefully be a happy ending for us.
Spring is the beginning of fundraising season. We want to thank everyone who has dedicated their time to fundraise for ARC over the last few months:
Dionne, Lorna and Louise all ran the London Landmarks
Half Marathon and raised over £1700 in total for ARC.
Jacob completed the Brighton Marathon in April for ARC, and raised £4895.
Will ran the Manchester Marathon and raised £2200 for ARC.
Pamela and Colston raised £250 from Pamela’s 70th birthday for ARC.
Hannah did a Skydive and raised £769 for ARC.
Corinne and Julie walked the Jurassic Coast Ultra Challenge and raised £2080 for ARC.
Kate and Jack raised £210 in memory of Sidney.
Becki ran the Weston Super Mare Half Marathon and raised £340 in memory of Ethan.
Hannah and Oliver raised over £1700 in memory of Hazel.
Angus and Charley raised £5710 for ARC in memory of Robyn.
Hannah raised £653 in memory of Eva.
Sophie ran the Hackney Half in May and raised £455 for ARC. Her son, Sam, also ran and raised £233.
Kate and Jack raised £210 in memory of Sidney.
Clare ran the Edinburgh Marathon and raised £1163 for ARC.
Sam & Sophie
Emma ran the Edinburgh Marathon and raised £1323 for ARC.
Lloyd ran the Great Manchester Half Marathon, and together with wife Rachael managed to raise over £1500 for ARC.
Jess ran the Great North 10k and raised £1840 for ARC.
And here a few of the donations we have had over the last four months:
Paul donated £131 to ARC
Mercy donated £1000 to ARC
Chris donated £300 to ARC
Laura donated £300 to ARC
Aneeqa donated £200 to ARC
We have a number of publications on our website designed to support individuals who are making decisions following a prenatal diagnosis, as well as to provide support to bereaved parents and their families after a termination for medical reasons. These resources have been developed by the ARC team over years of experience supporting families through this difficult time.
Our goal is to ensure that our support services are as accessible as possible. We now offer our publications “Supporting You
Throughout Your Pregnancy” and “Ending a Pregnancy After a Prenatal Diagnosis” in several languages, including Arabic, Bengali, Polish, Punjabi, Romanian, Welsh, and Urdu.
Additionally, we provide audio versions of these booklets, catering to those who may find it easier or more comforting to listen rather than read.
You can view and access these resources for free on our website here: https://www.arc-uk.org/publications/
Baroness Thornton
Juliet Stevenson
ARC Board of Trustees
Kate Bennett (Chair)
Francesca Corman (Treasurer)
Liz Szewcyzk
Dagmar Tapon
Marie Gerbier
Guz Ali
Brenda Naluyima
ARC Staff
Jane Fisher Director
Sally George National Support Coordinator
Hannah Coates Engagement and Development Coordinator
Jenny Price Liaison and Development Coordinator
Rebecca Hawkes Community and Digital Fundraising Officer
Hannah McInnes-Dean Research Associate
Katy MacWard Development and Partnerships Officer
Karen McIntosh Coordinator for Scotland
Miranda Glen Coordinator for Wales
Suzie Heaney Coordinator for Northern Ireland (Maternity Leave)
Barbara Riley Finance Coordinator
Vic Swift Admin Support
Donate to ARC
ARC is funded almost entirely by donations. If you have valued our help and support, please help ARC ensure that tomorrow’s anxious parents receive the same.
Visit www.arc-uk.org/donate Or call 020 7713 7356
Thank you for your support. Your donation will make a difference.
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