Following the outpouring of heartfelt messages since the death of Captain Sir Tom Moore on 2 February, his family pledged to celebrate his life with an event that everyone, in the UK and around the world, could be involved in. That event is the Captain Tom 100 and CHF is proud to be inviting our supporters to take part.
CHF, like many other charities, has been hugely impacted by the Covid-19 pandemic. It’s had a catastrophic effect, with the cancellation of thousands of fundraising events and the loss of billions in income.
Captain Tom 100 offers CHF supporters, of all ages and abilities, the opportunity to raise crucial funds for our charity, while at the same time celebrating Captain Tom’s generosity of spirit, the hope and joy he brought to millions, and his sense of fun.
How it works
It’s so simple. All participants need to do is dream up a Captain Tom 100 challenge based around the number 100 and do it at any time and anywhere over Captain Tom’s birthday weekend – starting on Friday 30 April through to Bank Holiday Monday 3 May.
The challenge could be walking 100 steps or running 100 metres, scoring 100 goals, baking 100 cakes, climbing 100 stairs, hopping 100 laps of the garden, building 100 sandcastles, writing a 100-word poem, flipping 100 pancakes – anything at all, inside or out.
Once supporters have chosen their challenge, they can fundraise or donate to CHF, and share their 100 on social media, using #CaptainTom100
Captain Tom’s daughter, Hannah Ingram-Moore, said: “We are so grateful for the incredible support we have received since my father started his record-breaking fundraising walk and that his message of hope was shared with the world. Captain Tom was very proud to be able to leave behind the growing legacy of his Foundation. We know he would love the idea of inviting everyone to get involved and share their Captain Tom 100 so that together we can ensure ‘Tomorrow will be a good day’. We look forward to celebrating with you on what would have been his 101st birthday weekend – it’s going to be fun!”
“We are hoping that people will take on the spirit of Captain Tom and do a hundred things to raise funds for CHF. By doing this they will help us continue our work to support children with heart conditions and their families.” Anne Keatley-Clarke, Chief Executive, CHF
Using a technique that ‘reanimates’ the heart outside of the body, Great Ormond Street Hospital, Royal Papworth Hospital and NHS Blood & Transplant expand the donor pool and perform six paediatric heart transplants in 2020
Great Ormond Street Hospital (GOSH) and Royal Papworth Hospital (RPH) have collaborated to introduce a world-first paediatric heart transplant technique that has successfully expanded the donor pool and increased the number of transplants for eligible children in the UK by 50%.
The donation after circulatory death (DCD) heart transplant programme was previously only available to adults. For the first time ever, using a portable organ perfusion system called the TransMedics heart Organ Care System (OCS), the technique has now been made available for children, paving the way for six life-saving heart transplants for young patients at GOSH in 2020.
It is the biggest and most successful paediatric DCD heart transplant programme in the world.
DCD refers to the retrieval of organs for transplantation from a patient whose death is diagnosed and confirmed using cardio-respiratory criteria. This means that the donation to transplantation process can start after the heart has stopped beating, death is confirmed and organ donation consented to by the patient’s family.
Using the OCS, doctors are able to reanimate the heart, medicate it and keep it beating outside of a human body, keeping it healthy whilst it is transported to the recipient patient. This not only allows DCD hearts to be used – immediately widening the donor pool – it also allows them to be transported further and gives surgeons and nurses time to assess an organ’s function and apply medication to the heart if required.
The first adult DCD heart transplant in Europe was performed at RPH in 2015. Prior to this, heart transplants had only been possible using the DBD (donation after brain-stem death) technique.
The collaboration between RPH in Cambridge – whose team retrieves the heart – and GOSH, whose team implants the organ, represents the first-ever use of the DCD technique in paediatric transplantation anywhere in the world.
Across Britain there is a shortage of suitable donors, which means that the number of children who would benefit from organ transplantation exceeds the number of organs available. Children face longer than average wait times due to the difficulty of finding the right match and because the consent rate for paediatric organ donation is much lower than the national average for adults.
For children who can receive adult-sized hearts, the DCD heart programme is a promising solution to reducing the waiting time.
Speaking on the significance of the programme, Jacob Simmonds, Consultant Cardiologist and Transplant Physician at GOSH, said: “In early 2020 we had more children at GOSH on the transplant list than I’d ever seen in my 16 years working at the hospital.
“Every day a child waits there is a bigger likelihood that they may get too ill even for transplantation, or worse. Although medical advances have come far, for some children with heart failure an organ donation is truly their only hope.
“With the DCD heart programme we have unlocked more opportunities for donation, essentially doubling the number of transplants done at GOSH in eligible patients weighing over 20kg. It’s game-changing and work is already underway to make the technique suitable for our much younger and smaller patients.
“Ultimately, though, this still relies on families having conversations around their organ donation wishes, and then of course the bravery to consider making this precious, life-saving gift at a time of unimaginable tragedy.”
Mr Marius Berman, Consultant Cardiothoracic Transplant Surgeon at Royal Papworth Hospital, said: “We have taken our experience of performing DCD heart transplants on adults during the past five years and collaborated with GOSH to introduce this programme into clinical use within paediatric transplantation.
“No one else in the world is currently doing this. It’s been an incredible multidisciplinary team effort to make this possible, involving everyone from the specialist nurses in organ donation and transplant coordinators to paramedics, physicians and surgeons. Above all, none of this would be possible without the generosity of every donor and their families.
“Truly, it showcases the best of the NHS and what can be achieved when we come together for the benefit of our patients.”
GOSH and RPH are national transplant centres, playing leading roles in providing paediatric and adult transplant care respectively for patients from all over the UK. They are also two of the largest heart and lung transplant centres in their fields across Europe.
GOSH currently has 24 children waiting for a heart transplant, and between 2014 and 2019 the average waiting time was 282 days. Despite the COVID-19 pandemic, the heart and lung transplant service at GOSH continued operating. Last year the clinical team performed a record 24 heart transplants at the hospital, boosted by the six DCD hearts.
John Forsythe, Medical Director for Organ Donation and Transplantation at NHS Blood and Transplant, said: “We have supported the DCD heart programme from the early research stages. It means some people can donate their hearts, as well as other organs, where it wouldn’t have been possible in the past, giving life to patients on the waiting list. This new technology is a significant step forward in heart transplantation in the UK and, indeed, the rest of the world.
“We are aware of children and young adults waiting in hospital, often attached to machines, in desperate need of heart transplants. This offers another way for them to get that transplant thanks to the incredible generosity of donors and their families combined with this new technology. The collaboration between Royal Papworth Hospital and Great Ormond Street Hospital is saving the lives of children and bringing hope to the families of those children.
“It has been great to see heart transplants continuing during this pandemic and incredible that lots more children have received a heart compared to the previous year, thanks in part to this collaboration.”
The DCD paediatric heart programme has yielded positive outcomes so far, with patients getting discharged home on average 13.5 days after transplantation. This is almost 50% shorter than published data from international centres.
Speaking about this, Dr. Simmonds said:
“The donation and transplantation process are incredibly complex and when it comes to children it’s also very emotional – for all of the families and the clinical teams involved. For children waiting around the UK and the world, the success of this programme will have huge significance – that even in this time of international crisis with a pandemic, there is still hope. It’s taken five years to get to this point with the DCD technique, but this is absolutely a step in the right direction.”
The OCS machine is currently the only medical device capable of making DCD heart transplantation a clinical reality. Although this technology limits donation to donors who weigh at least 50kg – all six recipients under the programme so far are aged between 12-16 – the teams at RPH and GOSH are working together to develop a new machine that will enable DCD heart donation from even smaller infants, opening up a new dawn of transplantation for babies and young children, where donors are the most scarce.
About the DCD heart programme
Donation after circulatory death (DCD) is the donation of organs by patients who tragically have a non-survivable illness. These patients are typically unconscious in intensive care in hospital and dependent on ventilation. Detailed discussions between doctors, specialist nurses and the patient’s family take place and if the family agree to organ donation, the process starts.
After treatment is withdrawn, the heart stops beating at the time of death and these non-beating hearts are then transferred to a portable machine called the TransMedics heart Organ Care System (OCS) where the organ is perfused with oxygenated blood and assessed to see whether it is suitable for transplantation.
Previously, all paediatric heart transplants were via the DBD (donation after brain stem death) method, which use hearts from a donor who is brain-stem dead but their heart is still beating.
The DCD technique not only allows organs to be retrieved from farther distances, immediately widening the donor pool, it also means organ retrieval teams have much more time to assess an organ’s function, removing the risk of an organ failing post-transplant.
The first DCD adult heart transplant in Europe was performed by Royal Papworth Hospital, funded by Royal Papworth Charity, in 2015. The Cambridge-based cardiothoracic hospital has the largest and most successful adult DCD heart transplant programme in the world, with 86 of the nearly 200 operations performed there – that’s more than 40% of the global total. Adult DCD heart transplants have only been performed in five countries; the UK, the USA, Belgium, Austria and Australia.
DCD paediatric heart transplants are even rarer. Although four have been performed worldwide the collaboration between RPH and GOSH is the first time ever that a paediatric DCD heart transplant has been performed where the heart is removed from the donor’s body and transported on the OCS, which keeps the heart beating on a machine, before it is transplanted into the recipient potentially hundreds of miles away.
About Great Ormond Street Hospital for Children NHS Foundation Trust
Founded in 1852, Great Ormond Street Hospital is one of the world’s leading children’s hospitals with the broadest range of dedicated, children’s healthcare specialists under one roof in the UK. With more than 252,000 outpatient and 43,000 inpatient visits every year, the hospital’s pioneering research and treatment gives hope to children from across the UK with the rarest, most complex and often life-threatening conditions. As an international centre of excellence in child healthcare, our patients and families are central to everything we do – from the moment they come through the door and for as long as they need us.
About the UCL Great Ormond Street Institute of Child Health (ICH)
The UCL Great Ormond Street Institute of Child Health (ICH) is part of the Faculty of Population Health Sciences within the School of Life and Medical Sciences at University College London. Together with its clinical partner Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH), it forms the UK’s only paediatric National Institute for Health Research Biomedical Research Centre and has the largest concentration of children’s health research in Europe. Click her for more information.
About Royal Papworth Hospital NHS Foundation Trust
Royal Papworth Hospital is the country’s main adult heart and lung transplant centre and one of the world’s leading hospitals for cardiothoracic transplants. The hospital was founded in 1918 and began its transplant programme with the UK’s first successful heart transplant in 1979. In the 41 years since, it has become a world leader in transplant innovation; the UK’s first successful heart-lung transplant in 1984; the world’s first heart-lung and liver transplant in 1986; Europe’s first DCD heart transplant in 2015; and the world’s first DCD heart-lung transplant in 2019.
CHF has been involved, alongside other heart-charities in the CHAMPION study, the first part of which looked at the impact of COVID-19 on adults and children with heart conditions.
CHF ran an online forum in a closed Facebook group where parents could answer a series of questions and also debate with each other.
The results of the first part of the forum which dealt with the impact of COVID-19 has now been written up as a report, the pre-published version can be downloaded by clicking on the image below.
The main part of the CHAMPION study is still ongoing and it is not too late to join if you are the parent or carer of a child with a heart condition. The CHAMPION study wants to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health care. Click on the image to join the group.
A summary of international papers researching the impact of COVID-19 on patients with congenital heart disease.
If your child is unfortunate enough to text positive for COVID-19 please inform their cardiac team so their data can be added to the UK study.
The BCCA (British Congenital Cardiac Association) have updated their guidance for patients, parents, charities and support groups in light of the national lockdown for England. They can be read here.
This advice is that those in the clinically extremely vulnerable group no longer need to follow previous shielding advice. Guidance advises attending school and returning to work for this group of patients as the remainder of the population.
The Royal College of Paediatrics and Child Health have also updated their advice on shielding extremely vulnerable children and young people. They can be read here.
Governments may reintroduce shielding advice at a local or national level. If this happens, children and young people who are advised to shield because they are CEV will receive a letter from the government. This may include advice not to attend school. Parents should contact their child’s specialist or GP if their child receives a letter telling them they are clinically extremely vulnerable and they should shield that they did not expect. If they do not have a specialist then parents should discuss with their GP who should arrange their removal from the shielding list or request advice from their local paediatric centre.
CHF advises that if you still have concerns about your child and the need for shielding to contact their cardiac team for guidance.
Told by her mother Tas
On the 22 February 2016 I was absolutely delighted to hold Sophia in my arms for the first time. Apart from slight jaundice and not feeding much and being very sleepy, she was perfect, she was my 3rd child and weighing 9lb, also the heaviest. I was told babies are often exhausted by labour and may not feed a great deal in the first 24 hours.
The first week at home was intense, Sophia would cry all the time, not feed well and just wouldn’t settle no matter what I did.
By around week seven at home I was extremely worried and stressed, her feeding issues were not resolved despite attending several GP appointments and my six-week post-natal assessment. I was reassured each time that my baby was fine.
At week ten, I trusted my instincts and rushed Sophia to hospital where I finally got an answer, but it was beyond anything I could have possibly imagined.
Sophia was diagnosed with Dilated Cardiomyopathy (heart failure) and failure to thrive. She had an enlarged heart and needed immediate cardiac intensive care at Great Ormond Street Hospital (GOSH).
Sophia spent over two months at GOSH in cardiac intensive care before being transferred to a high dependency ward, she was later transferred to Northwick Park Hospital before finally being discharged home.
Sophia has spent a great deal of time in hospital, for the first three years of her life I would rush her to A & E on average every two weeks and her admissions were endless. She developed metabolic issues around seven months of age and her blood sugars would drop drastically warranting further clinical investigations at GOSH metabolic medicine clinic.
Sophia was placed on the heart transplant register list in December 2017, and continued to be monitored very closely by GOSH with monthly check ups ensuring she was clinically stable enough to be medically managed at home despite having a heart function at only 20% capacity.
Sophia has spent most of her life so far in hospital, she continues to be nasal gastric tube fed, has to undergo endless tests, routine medical observations, cannulas, PICC lines, so on and so forth.
A match is found
Early in 2019 we finally got the call at 5.o0 am in the morning, it was GOSH, they had found a ‘match’ for Sophia. I remember just being in complete denial at first, refusing to accept in my head at this point in life that Sophia needed to go through such a major procedure with all the risks that it entailed. I was overwhelmed, after all she was bouncing around the day before full of energy and had been seen by her consultant only two days earlier.
I needed to speak to Sophia’s consultant, which I did straight away, I then realised that actually despite her physical resilience my child is chronically and seriously sick and that without a heart transplant she wouldn’t survive.
Within a few hours an ambulance arrived, we were taken to GOSH where Sophia underwent a cardiac transplant at 3.30 pm.
Despite a great deal of understanding and familiarity with her condition, nothing prepares you as a parent to witness your child undergo such a huge operation.
I let go of her tiny little finger after being anaesthetised, hearing her last words to the surgical team “Please don’t hurt me”.
Finally, she fell asleep and the nurse asked me “Do you want to kiss her goodbye?”.
“Goodbye” was the catalyst, I just broke down in tears, after being so strong and resilient all day, I walked away an emotional wreck wondering if I’d ever see my daughter again but hopeful this would be a success as she was in the best place possible at GOSH.
Sophia is now post heart transplant. She continues to have regular hospital admissions for medical treatment for infections because she is immunocompromised. Sophia no longer has the symptoms of excessive sweating, breathlessness, increased heart rate etc. Her new heart is working well and thankfully there have been no signs of transplant rejection.
Despite having to endure seven hospital admissions for various infections and a cardiac biopsy during these past few COVID-19 challenging months Sophia continues to thrive and never lets her health challenges stop her from having fun.
Sophia is now four years old and a very confident and social little girl. She always engages directly with the doctors and nurses with her energetic and humorous personality. During her hospital admissions she loves chatting to everyone she meets and especially likes to tell people “My old heart wasn’t feeling very well, it had a tummy ache and now the doctors put a new heart inside and zipped me”.
I hope Sophia’s story will help raise awareness of the importance of blood and organ donation.
A transplant is not a cure, but it can be very effective in improving quality of life and increasing life expectancy. A heart transplant is only used as a last resort when all other options have been exhausted.
I see an improved quality of life for Sophia and feel blessed she has had this opportunity, as the sad reality is many children die waiting for a donor heart as there is a shortage.
I am absolutely amazed at the precision of assessment and ongoing treatment Sophia continues to receive from her specialist team at GOSH, and as her mother I ensure she attends all her appointments and is given her immunosuppressant (anti-rejection medicine) on time and strictly in accordance with her medical care plan, to prevent rejection of her new heart.
Sophia the donor
I am happy to share that Sophia’s diseased heart was able to benefit other children. Her heart valves were in excellent condition and we agreed to donate them at the time of her transplant. It’s pretty amazing to think as a family we were able to make a small contribution and that Sophia’s old heart has benefited others.
Even within her diseased heart there was potential to make a great difference.
Sophia with her Molly’s Dolly provided by the Children’s Heart Federation. The doll has scars which match Sophia’s surgical scars.
Sophia told her Health Play Specialist.
“I got Molly doll from the postman he gave it to me this morning, and guess what Gail, guess what my Molly doll has stitches near my tummy near where I had the big surgery, where they take the whole heart out and zipped it.
“I’m going to bed now with my Molly dolly and I will bring Molly to the hospital next time I come, now Molly is tired and she will sleep after I wrap her in the blanket and give her medicine and her blood test because she has coronavirus”.
The BCCA has provided an update on returning to education for children with heart conditions.
Told by her mother Caroline
Hope was born on the 24th January 2020 with Trisomy 21. This brings with it a list of possible medical issues, including heart defects and so she was given many scans at a just a day old. The scans revealed that Hope had a partial ASD and it was left to hopefully close up by itself. We were therefore discharged from hospital, much to the delight of her two older sisters; Rachel (12) and Laura (9). But by the 1st of February Hope’s feeding had deteriorated mainly because she was sleepy all the time and was vomiting a lot. We took Hope to A&E and were admitted to the cardiac ward on the 9th of February.
Further scans revealed that Hope had a complete AVSD and a nasal gastric tube was inserted to help with her feeding. Finally, after establishing a feeding pattern, Hope was discharged from hospital on the 21st February.
Hope attended clinic early and it was decided to plan surgery for when she would be four or five months old. In the end Hope was already six months of age when she finally underwent surgery on the 10th July, during the 2020 pandemic.
Hope developed chylothorax after her operation, which was something we had been warned could happen, this delayed her recovery, but despite this, she did amazingly well and was home by the 21st July.
There were a few things we had been prepared for because of meeting another Mum whose baby had her repair while we were in hospital in the February. This helped a lot, but there were still a few things that took me by surprise and like everyone else who goes through this I found it heartbreaking to see my baby in pain.
Hope’s valves are still a little leaky and will need to be checked regularly. She is now thriving and hopefully will need no further surgery but we’ll wait and see.
We are so happy with the amazing work of the doctors and nurses in PICU and Ward 1E. We are looking forward to the future with lots of cuddles and smiles from baby Hope.
CHF has continued to support children with heart conditions and their families during the pandemic and are making plans for the future.