SUPPORTING FAMIL IES , CELEBRATING L IVES

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FAMILY STORIES

EVENTS

NEWSRESEARCH

& LOTS MORE

SUMMER 2018

WELCOME FROM The Chair

The middle of the hottest, country wide heatwave we have had in years, feels like a good time to be writing this letter for the SOFT UK Summer eNewsletter!

I hope everyone is enjoying the sunshine. A lot has been happening in SOFT, as you will see from much that is captured in the following pages. Including the English Family Day, held this year in Solihull, West Midlands on Saturday 9th June. There are some lovely pictures of families enjoying a great day. Now we are looking forward to the Scottish Family day at the end of September.

We have to thank Nick Withers, who came along and took some wonderful photos. More of the photographs she took will be used on our website and promotional materials in future. In fact we are replenishing the stock of images we hold and which we can use for this purpose, in part due to GDPR (more of GDPR later). To be compliant with GDPR we are required to have explicit permissions to hold and use any photographic image, which means we need your written consent to use any photo we have of you or your child. In addition part of our work with the NHS involves getting new and more appropriate photo͛s into the materials the NHS

produces for parents who receive a new diagnosis or higher chance screening result for Trisomy 13 or 18. If anyone would like to share their own photographs for this purpose, do get in touch with us. In fact, we have noticed that we are increasingly being asked to be involved with NHS consultations, on things like new information they are developing, standards of care which are being written etc. A good sign that the NHS is seeking to use families experience and perspectives to influence what they do. A huge Thank you to those of you recently who took part in telephone interviews. I am sure it is going to make a real difference.

Whilst I am saying ͛thank you͛, I would also like to record how grateful we are to our lovely Volunteers, without whom we could not continue the work we do. Our ͛Befriender͛/ Support Volunteers, who do such a fantastic job responding to families who contact us for support. As well as all those who offer their time, skills and experience to help us in so many ways. We couldn͛t do without you. If anyone is thinking they would like to get involved, you will find us a friendly bunch, and you don’t need to have any special skills ͛ just a bit of time and willingness to help.

We have said Good-bye to Gareth Glendinning who stepped down as Trustee recently. Gareth was dad to Phoebe, who had Trisomy 18 and lived for 3 days. Gareth has been a great Trustee, supporting a lot of the NHS training work we did last year. He will be greatly missed. You will see later in the Newsletter we are now recruiting new trustees, so we would love to talk to you if you would like to know more about what is involved.

Kelly Bluett, our Administrator has also moved on to pastures new. But it has been so nice to welcome back an old friend ͛ Demi Powell. Demi has been appointed to the role of SOFT Project Manager. She brings a wealth of experience of working in the charity sector, was previously a Trustee for SOFT and has a long association with us since she lost her little boy Connor. Mum now to three energetic children, she is working part time with SOFT and already is really helping us to move forward.

I hope you enjoy the stories, updates and information in the following pages. Have a great summer and we hope to see many of you in Scotland in September.

Very best wishes Jan, Chair SOFT UK

Hello everyone,

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CONTENTS :

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Soft UK News

Family Stories

Events

Trisomy Blog

Fundraising

Volunteering

Research

Resources

SOFT UK NEWS

FASP Update

NIPT UpdateThe NHS is Introducing Non-invasive Prenatal Test (NIPT) Screening from October 2018

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Liane Powell, Fetal Anomaly Screening Programme Project Lead, Public Health England described the introduction of the additional option of non-invasive prenatal testing (NIPT) to the fetal anomaly screening pathway in England, from October 2018.

The test is already available on the NHS in Wales and Scotland are discussing their process for implementation.

Evidence has shown that introducing this test could reduce the number of women undergoing invasive diagnostic testing, which carries a risk of miscarriage. We will offer NIPT to women who have received a higher chance result of having a baby with Down’s, Edwards’ or Patau’s Syndrome following first trimester combined or second trimester quadruple screening. It involves taking a blood test from the pregnant woman.

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The NHS Fetal Anomaly Screening Programme (FASP) developed a training programme in partnership with support organisations; SOFT UK, Antenatal Results and Choices (ARC), Down’s Syndrome Association and the Down’s Syndrome Research Foundation. Liane told of the “hundreds of staff who have already been trained.”

Describing the first training event, Liane said “The Imperial War Museum venue was a fantastic backdrop for a very successful first event in London. Some delegates even spotted Prince William, who was attending an official engagement at the same time.”

Events were held until the end of 2017 in venues ranging from Birmingham to Leeds and Manchester to Leicester. Early feedback suggests they have been well received, informative and thought provoking.

“The parent experience presentations were very emotional and thought provoking and I will certainly

Parent TrainingSOFT Families involved in Training NHS Staff

change some of my practice because of them. Excellent speakers throughout the two days” Fetal Medicine Midwife “The father who spoke about his son was particularly informative and much appreciated” Sonographer

The aim of the training is to help healthcare professionals support women in making personalised informed choices about screening for Down’s, Edwards’ and Patau’s Syndromes, which will include the additional option of NIPT from 2018. With the initial series of training now complete, ‘cascade’ training is

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now taking place across the country. The expectation is that all midwives, sonographers and obstetricians involved in prenatal care, will have had the training by the end of 2018.

The next step is improving the written information leaflets given to parents. SOFT continues to work with the NHS on this, and to provide images of children affected by Edwards’ or Patau’s Syndromes to be share on the NHS Choices website.

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SOFT UK NEWS

SOFT UK Networks

Together for Short Lives is proud to announce an exciting new initiative for children’s palliative care across the UK.

A new research study called “Make Every Child Count” will give an up-to-date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and will help to predict levels of need in the future.

Together for Short Lives has secured funding for this research from the True Colours Trust following a consultation with the children’s palliative care sector which identified this as a pressing need.

The study is led by Dr Lorna Fraser, Director of the Martin House Research Centre at the University of York.

Together for Short Lives Updates

International Clearinghouse for Birth Defects Surveillance and Research

New paper from colleagues at the ICBDSR on improving the collection of data on the causes, prevalence and outcomes for babies born with birth defects and rare diseases.

Abstracts are available from www.ncbi.nlm.nih.gov/pubmed/?term=29902591

Together for Short Lives has updated their resources for families whose child is diagnosed with a Life Limiting Condition.

To download their new pack, visit:

www.togetherforshortlives.org.uk/get-support

To read more, visit their website: www.togetherforshortlives.org.uk/making-every-seriously-ill-child-count

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National Voices are exploring the potential impact of the new patient data opt out on researching rare incidence conditions. The data opt out allowing people to choose whether or not they want to have their confidential patient information shared for purposes other than their own individual care. This includes instances where patient data is used for medical research or by commissioners to improve health services. While the opt-out is a step forward for patients having more say over their own data, it also has the potential to hinder research, especially research into rare diseases where there is less data available

SOFT UK NEWS

SOFT UK Networks

Genetic Alliance UK’s ‘Fresh Steps Project’ is developing a toolkit of information resources for families in Scotland who have received a diagnosis of a rare genetic condition or who have an undiagnosed condition. The toolkit is intended to be a flexible resource of information and signposting to support services in Scotland.

The project is now completing its consultation stage and next steps should be announced soon.

This could be a vital resource for our families, so we look forward to seeing how it develops!

Scottish Children and Young People’s Palliative Care Network

Proposed Managed Clinical Network – PELiCaN (Paediatric End of Life Care Network)

The outline proposal for the new nMCN was reviewed by National Specialist Services Committee (NSSC), which agreed to progress the application to the next stage and to finalise the proposal.

As part of the SCYPPCN, SOFT UK has submitted comment on the proposals and will continue to feed in to the process.

It is anticipated that this nMCN will work closely with the nMCN for CEN (Children with Exceptional Healthcare Needs). Seamless integration of these service models would provide a best case scenario for our families.

To keep updated with their work, they have a useful website:

www.knowledge.scot .nhs .uk/child-services/communities-of-practice/palliative-care-for-babies-children-and-young-people.aspx

National Voices

Genetic Alliance UK

SCYPPCN

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This is a huge step forward for the provision of Palliative Care Services to Children and Young People in Scotland. The paper addresses many key areas of concern for our families and could lead to significant long term changes to the way care and support are delivered to children affected by Trisomy in Scotland.

SOFT UK NEWSSOFT UK Website

In 2017, one of our amazing volunteers Matt Bradley created a new website for SOFT UK.

One of our key projects for 2018 is to get the website up and running as a first-stop information resource for families affected by Trisomy 13 and 18.

We hope to involve families in developing this resource, so please keep an eye on our social media pages for opportunities to become involved with this. We will be seeking opinions on everything from content to layout and ease of use!

We also hope to create a section of the website that will be helpful for professionals seeking information. As more children with Trisomy live longer, that greatly increases the number of professionals working with them and their families.

Comments and suggestions about the website are also welcome any time. If you have a great suggestion, just let us know on administrator@soft.org.uk

SOFT UK and GDPR

Several months of hard work, irritating emails and excessive screen time and we are delighted to announce SOFT UK is now GDPR compliant!

We would like to say a huge thankyou to Louise Capper and Denise Copley who spent hours in front of a database updating our files. There are no big changes for members, other than our commitment to respecting your data and privacy being specified in more places!

It does mean that if you want to receive our newsletter by email or if you send us stories or photographs for publication, we will ask you to complete a short online form to give your consent. But we have made this as quick and easy as we possibly can!

If you would like to sign up to receive SOFT UK emails please visit this link: http://eepurl.com/dvqrv5

If you would like to give us permission to use photographs or articles for publication please visit this link: http://eepurl.com/dBbQ1j

Kathryn, who works as a Midwife at the Royal Glamorgan Hospital, was nominated by local parents Tina and Debbie Mountjoy. Their daughter Lacey-May was born with Edwards’ Syndrome and lived for only 6 weeks.

Tina said of Kathryn, “she is undoubtedly the most caring and compassionate midwife I have ever known. She supported our whole family during a really difficult time, helping us make precious memories of Lacey-May. She was also there 2 years later when we went on to have another baby. She made us as comfortable as possible and kept reassuring us that everything would be ok this time around."

Kathryn was presented with her award by Chris Rose, SOFT UK Co-Founder and Trustee. Tina, Debbie and Debbie's parents David and Gladys Lewis also attended the presentation at the Royal Glamorgan Hospital on April 19th.

Chris Rose said, “These are such rare conditions that some clinicians might never have seen a case before. We want to recognise those who provide excellent care for our families at the most difficult of times.”

Kathryn was delighted to be nominated for the award, thanking the Mountjoy family for the enriching experience they had given her: "Thank you for today , so touching! Certain families and situations touch your heart during your career! Tina and Debbie you certainly touched mine, not only are you strong, supportive, caring people you’re truly special !It was a privilege to be a part of your journey and meeting your beautiful daughter Lacey, so I’d like to thank you. You truly are amazing, and I’ll always remember you both."

Kerri Feeney, head of midwifery for Cwm Taf health board said "Kath in her new role is now sharing her learning and experiences to make sure midwives and support workers continue to learn and develop throughout their careers and ensure women and their families have the best care.I have to say Kath is a shining star within the department and in only a few weeks of me being within this role, it is clear she has a lot to offer."

Every year SOFT UK presents awards to professionals who go above and beyond the call of duty to support families affected by Trisomy. This year we presenting the award for Outstanding Clinical Care to Midwife Kathryn Hennessey.

SOFT UK NEWS

Research Project

SOFT is working with a PhD Researcher, Helen Foster-Collins from University of Exeter, to undertake a specific research project. The research is to understand what support families with a child affected by Trisomy 13 or 18, require from clinicians and from SOFT or other support services.

We know that families can often feel isolated and overwhelmed, due to the rareness of Trisomy 13 and 18, their geographically scattered nature, and a lack of knowledge and positive attitudes amongst many medical staff regarding Trisomy conditions. The objective of identifying the support needs of these families, in a changing medical landscape, will help to:

• Give SOFT families a voice and help them to share their uniquely expert knowledge with medical clinicians and other families

• Assist SOFT UK to focus their efforts and funding in the right way, and support grant funding applications in the future.

• Increase research knowledge in what is an underfunded and under researched area

The project will be carried out, using qualitative methods, and recruiting families from SOFT, to identify their experiences and to answer the following research questions:

• What experiences of support have these families received from clinicians, from SOFT UK, and any other support services?

• Which gaps exist – that is, what support needs do these families identify as requiring to be met, or that they would wish other families in the same circumstances to have access to?

• What impact might these support services have upon their lives?

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Helen has already attended the SOFT Family Day in Solihull and met with families there. She hopes also to be able to come to the Scottish Family day in September, to get more experiences from our Scottish families.

Once the groundwork of the project is completed, Helen will write a formal report on behalf of SOFT, which can be used as demonstration of the families’ requirements in work that we do with the NHS and other agencies and to allow for better focus of our resources in meeting families needs. The findings of this report will also be shared with families.

Alison Pearson (trustee) and mum to Isabel (T18) will also communicate these findings to clinicians through existing networks via talks, etc. Findings may also be circulated via relevant medical publications such as professional magazines, to enhance awareness.

If you would like to contribute your experience to this research please contact Helen on hf270@exeter.ac.uk

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FAMILY STORIESEliana - Our Precious FlowerEliana was a true blessing to Joey and I. She was only very little, but her personality shone through her big expressive eyes. She certainly told us as her parents what she liked (cuddles, having a bath) and what she didn’t (being put in her cot, getting out of the bath). Even though from the day she was born she struggled for life, we thank God for the time we had with her. Eliana has been taken from us so quickly and it has been a struggle to cope and find meaning. Why did this happen? What is God’s purpose?

However, as we went through the motions and dragged ourselves out of the house, something dawned on me.

Consider the simple flower. Flowers are beautiful, but their beauty is only for a short time. They have been perfectly designed to fully fulfil a purpose, but once their purpose is fulfilled, they are gone. Try as we might no amount of prayers, nutrients or careful care from even the most diligent and loving hands can keep the flower beyond its intended bloom. Eliana was our precious flower. She bloomed in our lives and filled us with joy.

Her passing fills us with much sorrow, but I take much comfort to know she fulfilled her purpose, and, unlike the flower, her impact on us will be everlasting.

So, even though Eliana’s bloom was short, I thank God for her beauty and for letting us have the honour of caring for her. I’m also so very thankful for the people who helped us throughout - our family, friends and the North Tyneside community nursing team.

Chris, Daddy to Eliana.

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FAMILY STORIESRemembering RoseI had a maternal triple screening blood test and the results came back at 1:30 risk. I had had an ectopic pregnancy six months before and lost one Fallopian tube, so I decided against invasive testing due to the risk of miscarriage. Our 20 week scan didn’t identify any issues other than short femurs, but because I am only 4ft 11 I was hoping that all was well. I was booked for further growth scans because I’d developed Gestational Diabetes and at 29 weeks what appeared to be a clenched fist was identified and missing bones from her other hand. We were then referred to the fetal medicine team for further testing. At this stage we were advised that our baby girl had a large inlet VSD and that if she was confirmed with Edwards’ Syndrome that cardiology wouldn’t see us after her birth. We had an amniocentesis which then confirmed the T18 diagnosis. As a couple we were devastated. We considered termination because of how negatively the diagnosis was explained. However, our decision was to let Rose make her own way in this world and even though there was a very high risk of her being stillborn we continued with the pregnancy.

I had to challenge our hospital for a caesarian section if Rose got into fetal distress and also

resuscitation at birth. This was a significant strain on the pregnancy having to challenge our hospital for active treatment whilst already carrying a poorly baby. On the 29th of December 2016. Rose arrived on her own with no surgical assistance and was born at 37 weeks weighing 4lb 5oz. She needed five mins of oxygen help at birth but was in room air after eight minutes. She had genetic bloods after birth confirming full T18. Her VSD was later confirmed as a smaller muscular one. She had gastroesophageal reflux meaning her feeds had to be given in small regular doses to avoid aspiration into her lungs. She had nasogastric feeding from birth which was changed to jejunal feeding at 9 weeks old which was much more comfortable for her.

A beautiful and alert little girl who nobody at our local hospital expected to survive to delivery. I am so glad my husband and I went with our hearts. She loved her dummy and cuddles from mummy and daddy. Rose was fussy with baths sometimes she would love them other times she would cry, but very much loved being massaged and cuddled in a warm towel afterwards. I strongly feel that babies born with genetic conditions should all be provided with a standardised level of care. I hope that the challenges faced

by parents when a diagnosis of T18 is confirmed is altered in the future by these special babies who make it. Rose was one of those babies that surpassed the hospital’s expectations and therefore did cause some provoking conversations when the hospital were treating her. We had fifteen weeks (104) days with this little girl who changed our world forever. She passed away 12th of April 2017. She was loved by all who knew her, her big brother Jenson always talks about his baby sister and he talks to her now in heaven. She will always be in our hearts, our special little angel.

Rose Veronica Flesher

Since this article was written, Rose’s family have had a very special Rainbow baby! Seth Eros was born on the 26th May and is a happy and healthy bundle of joy! His middle name means “love’ and is an anagram of Rose. A gift sent from heaven from his big sister Rose.

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I’ve been trying to find the strength for a while to be able to post my story. So here goes...

In 2012 I fell pregnant. Unfortunately I miscarried at 5ish weeks. It then took us over a year to get pregnant again.

I gave birth to my beautiful baby boy in 2014 after a completely normal pregnancy with no complications. We started trying for our second child on the week of his 1st birthday, and were overjoyed to find that we were pregnant within about 6 months (typically normal).

Sadly, we got to 6/7 weeks and miscarried again. Wanting desperately to have another baby, we got pregnant again about 5 months or so after, but miscarried again at 7 weeks. We could not figure out what was going on.

Because we had not had three consecutive miscarriages, we were unable to get any help from the doctors.

We got pregnant again a while later, and we really thought we had done it this time -we made it to 10 weeks! Shortly after, I started to bleed a little so went in for a scan. They told me that I had had a silent miscarriage and that my baby had died at around 6-7 weeks again. I had to take some

FAMILY STORIESMummy of Angels

tablets to make things move along as I was not bleeding. The pain was horrendous I didn’t realize it was like an induction.

After the miscarriage, we were finally seen by a recurrent miscarriage specialist. He did bloods and found I have lupus

thrombophilia - a clotting disorder where clots get stuck behind the placenta and cause the miscarriage. To help prevent this from happening again, all I had to do was to take 75mg of baby aspirin that you can buy over the counter. That one little thing could have saved all my babies! I was so angry and I still am.

After seeing the specialist, despite our anger and sadness,

we knew we could have a successful pregnancy, and 3-4 months later we got pregnant again.

I was very nervous but I was taking my aspirin every day and I was feeling ok. I got to about 6 weeks 2 days and started bleeding, but had no cramping like before. I went in and they scanned me that day. We saw baby’s Heartbeat!

I was over the moon, but still very worried. It

ended up being a low progesterone level, but this was after lots of bleeding over a few weeks.

I thought I miscarried a few times, and it was hard dealing with that sick sinking feeling over and over

again, but we took more progesterone and

my bleeding eventually stopped, thank God. We

went in for my 12 weeks scan and they said everything was ok, but put me back 3 weeks. I knew when we conceived, so I was a little concerned, but they said everything was ok, and so I left and tried to relax a little. I came back a week or so later to have the nuchal fold scan as they struggled to see on the previous scan. They took bloods as well. I remember the nurse asking why I was having the downs test. I told her that if my baby had Down’s, I’d love him or her no matter what, but that I needed to be prepared.

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From that week onwards, my life got turned upside down and inside out. “We saw baby’s Heartbeat! I was over the moon, but still very worried”We never got the letter, we got the phone call instead. I was there and all prepared to hear them say my baby had downs. But instead she said our baby may have Edward’s Syndrome. I had no idea what it was. I didn’t even know that they tested for it! When you Google Edward’s Syndrome, all you seem to get is that it’s not compatible with life. We immediately went in for a scan. I was praying our baby was going to be ok and we could finally finish our beautiful family....

It never happened. The head sonographer looked at our beautiful baby and told us she had so many problems. There was a massive amount of fluid on her brain, her hands were clenched together and her feet were bowed, her chest and stomach was distended, her heart was only filling a 1/4 of the chamber when it should be ¾, her eyes were too far apart and there was some facial abnormalities...

This was the worst day of my life. By this point, my son Theo knew I was pregnant and that he was going to have a little sister. But we had a choice to make. The reason I was bleeding so much in pregnancy was because it was a threatened miscarriage. My baby girl was trying to leave, but I kept stopping her thinking I was saving her, but I wasn’t! I felt so angry and sad and helpless all at the same time, but I had to be a mother to my son I already have.

I felt my baby would not have

survived, and the thought of waiting every day for your baby to die broke my heart more than anyone could imagine. I had to let my baby girl go.

I gave birth to Willow on the 11/10/17 at 19wks, one week before my son’s 3rd birthday. We had her funeral on the 1st of November and it was one of the hardest few months I’ve ever been through. We have her autopsy report back and will be seeing the specialist on Thursday to see if it was a full or half chromosome.

If it was a full then it should not happen again as it’s very rare but if it was a half it could be hereditary. The thing is.... I’m pregnant again. I’m on all the right meds and we hope everything is going to be ok, but I’m petrified!! I don’t feel pregnant and I think it’s because I don’t want to feel pregnant because I’m so scared. I’m just praying that we get the news we want to hear on Thursday so I can finally stop pulling myself down.

Katrina Falconer, Mummy to a beautiful boy and a number of angels

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Update: Since writing her story, Katrina had the autopsy report back –Willow was diagnosed with XXX. Sadly, Katrina miscarried again at 10 weeks. She and her family remain in our thoughts and prayers.

FAMILY STORIESIn memory of Sarah Elizabeth Montgomery: 5th July – 30th September 1989

It was January 1989 and I can remember feeling – knowing – that my pregnancy with Sarah was not right. Mother’s instinct I suppose. I mentioned to it to my G.P who dismissed it instantly. It was only when the final scan showed abnormalities and I developed life threatening pre-eclampsia, that my deep fears were shown to be correct. Those of you reading this will have gone through your own fears and tragedies and we all have own horrendous experiences. However, the overbearing feeling I had after I gave birth to Sarah was one of loneliness…

At first I was told Sarah had ‘Potter’s Syndrome’ and after a few medical students (without my knowledge) poked and prodded at Sarah, I was told she had Patau’s Syndrome. I was still reeling from the life threatening pre-eclampsia symptoms and struggling to understand what the implications would be for Sarah. An aloof consultant visited once and stated that she was ‘incompatible with life’ and she was so rare no one knew anything about her condition. I was told that the medical profession would not intervene but they would not let Sarah suffer. I was left in a hospital room, on my own with Sarah, and the nurses told me that they dreaded coming to my room because they did not

know how to advise me. Sarah could not feed very well but there was no advice, feeders…..nothing. Eventually, I took Sarah home and, again, the health visitor only came once because she found it too difficult. How did this make me feel? Alone. Bewildered. I had a two year old little boy to look after, very little family support and a baby that I was struggling to feed and look after. When I took Sarah out in the pram, the mothers that I had met during the ante-natal classes avoided me and I had to make so much effort to make them feel better….

Unfortunately, my beautiful Sarah died, aged three months, at the end of September. I loved her so much and feel so blessed that I was able to take her home and spend time with her, despite a total lack of support or advice from the medical profession. It was shortly after Sarah died that someone told me about Jenny Robbins and Christine Rose who had started a charity called SOFT UK for babies born with Trisomy 13 and 18. I remember feeling so relieved that there were other people who were in a similar situation and that there was support out there. I wanted to become more involved with SOFT UK but I then had another baby and my husband died from stomach cancer two years later, so I did not have the time. I hope,

when I retire from teaching, to become a volunteer for SOFT UK and make up for lost time. However, I would like to use this opportunity to say thank you to Jenny and Christine. In 1989 I felt in a dark, lonely place and thanks to your dedication and determination, you have created a successful charity that can help babies and families in these difficult physical and emotional situations. You have improved knowledge and understanding in the medical profession and raised awareness nationally and worldwide.

Now, however tragic and difficult the situation, there is a plethora of support and help to enable people to cope. Thank you both so much. Finally, my family and I recently participated in a charity fun-run in memory of Sarah and for SOFT UK and raised £1425 with Gift Aid. A vast number of people asked me about the charity and so I hope this has raised awareness and helps with the funds in the future.

Stay strong…..Elizabeth Montgomery

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Maebh came into the world nearly 5 weeks early, weighing 3lb 11oz. She is our third baby but our first girl. After a traumatic entrance, Maebh was whisked away to neonatal. Unable to see her for 6 hours we were given constant updates of she was doing well, breathing on her own etc.

Finally 12pm came and we could go and see her…..

We weren’t prepared for what we were walking into; this tiny little baby, hooked up to every machine in the hospital, very sleepy and swollen. We were told “ have they told you about her ear?” “Have they told you about her hips?” Both answers to these questions were No!

After giving our tiny little girl the once over as you do, she had a very under developed right ear, and her hips didn’t mobilise at all. Coming to terms with that was bad enough, then

FAMILY STORIESOur Miracle Maebh

through the night I’m sitting next to her holding her hand and her nurse says have they told you about her small mouth? They were going to do some genetic testing, nothing to worry about….they do it more often than not …may just be one of those things.

So days whirled by…..

us just surviving, 2 boys 4 and 7 school runs, homework, hospital trips and everything that comes with it.

Day 10….. dad wants to see the Drs to ask a few questions, so he accompanies me up to the hospital that morning. Then carries on to work. Our nurse then calls me and asks where dad has gone and if he’s coming back?

They’ve got some test results back and thinks dad should be there to get the results. You automatically think the worst but my goodness we could never have been prepared for what we were about to hear. Called into a side room, us, consultant, nurse, secretary, he then proceeded to give us that fatal blow- Edward’s Syndrome, life limiting- won’t survive till she’s 12 months old…

If I’m honest the next days/ weeks passed by in a blur…. getting her home was massive, anxiety, worry, stress that’s just to touch on it. Readmitted after 5 days at home with apnea

episodes, to be told they don’t want to resuscitate her if it comes to it, why why why?

These were the arguments and battles we constantly face. Readmitted again at 8 weeks old with a severe apnea episode at home, when I had to suction her to bring her back.

But she’s now 24 weeks old……

She’s gaining weight amazingly, smiling, chuckling, reaching out, starting to hold her head up, still NG tube fed, suffers with reflux quite bad. But she’s here and fighting her own battles. We are so blessed to have her in our lives. She will continue to grow and thrive like she has done these past 24 weeks, despite all the negative comments and feeling around her diagnosis.

We will never give up hope and will continue to fight every breath for our little girl!

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This year’s SOFT Family Day took place at St John’s Hotel, Solihull. Well located for motorway and rail access, it turned out to be a great venue with very helpful staff. The day provided a great opportunity to meet up with families, catch up with news and meet some new additions! Trustee Dani’s baby son, Harry was a bundle of energy. Harry is the grandson of Jenny Robbins, Co-Founder of SOFT, so it was lovely to be able to welcome the whole family to the event together. New SOFT UK members Simone and Kevin also brought their gorgeous 5 month old daughter Maebh (partial Trisomy 18) to her first Family Day event.

Fa m i ly F u n i n t h e S u n SOFT UK FAMILY EVENT, JUNE 2018

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Fa m i ly F u n i n t h e S u n SOFT UK FAMILY EVENT, JUNE 2018

With the children safely enjoying themselves in Scalliwaggs creche, founding Trustee, Chris Rose welcomed everyone, and chair Jan Fowler updated on SOFT UK news. We talked about the work we have been doing with the NHS and showed a lovely video SOFT UK parents have made to train professionals about the conditions. Gareth Glendinning talks about his baby daughter Phoebe, who had Trisomy 18 and lived for 3 days. Trustee Alison Pearson talks about life with Isabel, who also has Trisomy 18 and is now six years old. This video has now been shown to hundreds of healthcare professionals across the country, helping to increase awareness and lead to better support for families in the future.

Our World Café event followed – an opportunity for a variety of table discussions on all things SOFT-related. Helen Foster-Collins is a PhD student undertaking a research project for SOFT UK to better understand what support families caring for a child with Trisomy 13 or 18 need from professionals and from SOFT. Helen explained her research and collected famiies’ views and experiences to include in her work. Volunteers Juliette and Sonia spoke about their experiences of volunteering with SOFT UK. (Neatly taking the opportunity to try and recruit others to join them at the same time!!)

We finished the morning with Aisling Roberts telling her family story. Aisling shared some beautiful photos of Darra, her 4 year old daughter who has Mosaic Trisomy 18. She described their journey with Darra and how well she is doing now. Her story was described in the evaluation by one person as ‘completely inspiring’. A great way to finish the morning, prompting everyone going into lunch chatting and sharing their own experiences.

After lunch the plan was for a thoroughly family orientated afternoon. Mr Froggle started things off with a magic, puppet and bubble show. The children seemed to love him, particularly when he enclosed them in giant bubbles. When they finally waved him good-bye and some strong fathers helped carry out a large tray of water and bubbles (without spilling a drop), it was off to the Let’s get arty session. Our thanks here go to the lovely Helen, a teacher friend of Chris’s, who stepped in at the last minute to run this session for us. She did a fantastic job and lots of lovely pictures were produced as a result!

Throughout the day we were fortunate enough to have Nick Withers and her friend with us. Nick is a talented amateur photographer, who volunteered her time to capture our special day. Nick is a mum with a daughter with a disability, who quickly discovered that getting our children to pose for photographs was not an easy task and so set about learning photography herself. We are so glad she did, as she took the lovely photographs you can see in these pages and some stunning portraits of the children and their families to keep as a memento of the day. We are so grateful to Nick for providing this opportunity to families, she definitely has the knack of getting the best shots and was lovely with our children.

It was a great event and we look forward to seeing everyone again next year.

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We are very grateful to our funders, without whose financial support the Family Event would not have been possible.

Fa m i ly F u n i n t h e S u nSOFT UK FAMILY EVENT, JUNE 2018

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Fa m i ly F u n i n t h e S u nSOFT UK FAMILY EVENT, JUNE 2018

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Balloon ReleaseJust before tea we held the Remembrance Balloon release. An important part of these events, as we remember and celebrate the lives of those little ones who grew their angel wings and who are forever in our thoughts. Our thanks to Sonia and her husband, Sandeep who organised the release of the bio-degradable balloons, decorated with beautiful and poignant messages, and led us all into the hotel garden to release them over the tree tops.

Fa m i ly F u n i n t h e S u n SOFT UK FAMILY EVENT, JUNE 2018

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Trisomy BlogJay, mum to Cali, Full Trisomy 18, writes a monthly BLOG for the SOFT UK Website. An extract from the latest edition is below……

Part 5 - Eating, walking and talking The majority of children with full Edwards’ Syndrome are fed via a nasogastric (nose) or gastrostomy (tummy) tube. For some this is because they have an unsafe swallow. For others their heart conditions have meant that they didn’t have enough energy to self feed. For others there just doesn’t seem to be a drive to eat. Cali takes all her food via her gastrostomy. We give her a blended diet, which means she has normal food blended to smithereens which is then pushed into her tummy via a syringe. When Cali is feeling good and healthy she will take some food by mouth. There is no medical reason why she can’t eat with her mouth that I am aware of, but I think lack of practise, a lot of illness and, yes, our lack of capacity to keep offering, have combined to make it unlikely Cali will ever eat orally. But in good periods I do try and offer, and when a syringe is put in her hand, if she feels hungry, she will pull it towards her mouth for me to pipe food in for her (health and safety alert: This method is definitely not recommended by professionals!). There ARE children with full Edwards and Patau who take all their nutrition by mouth. I think a lot depends on what else is going on with the child and the capacity of the family to keep trying. If you do have a new born with Edwards or Patau ask for a swallow test before you try feeding orally, not all babies have a safe swallow. . . . . . . . . Jay x To read the rest of Jay’s Blog visit….. www.soft.org.uk

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Fundraising

The Cowan family from Shrewsbury have continued their amazing fundraising efforts in memory of their son Albert, who was born sleeping on 11th August 2016.

On Saturday 30th June they held a charity auction with live music, raffles and the main auction! Albert’s Grandad Chris Brannan did a fantastic job playing auctioneer for the evening. They raised a fantastic £2600 in total.

A family friend Rob Fenwick, also recently ran a trail marathon in memory of Albert, raising a further £600 for SOFT UK! Lucy and Scott and their families have fundraised tirelessly for SOFT UK since Albert passed away, for which we would like to extend a heartfelt thankyou!

SOFT UK would like to say a HUGE THANKYOU to Ellie Mitchell, who completed the Virgin Money London Marathon to raise money for us.

Ellie was running in memory of her brother Ethan; “This is a cause close to my heart as my baby brother was diagnosed with Trisomy 18 during my mums’ pregnancy in 2013. Sadly the risk of miscarriage and stillbirth is high but of the babies who do survive pregnancy, almost 1 in 10 live to celebrate their 1st birthday. Some of these children thrive for many years, even living into adulthood. In our case we were blessed with 31 minutes of Ethan’s time before he passed away which we are extremely grateful for.”

Ellie completed the marathon in 6 hours 10 minutes and raised a fantastic £1417.50 for SOFT UK.

ALBERT ’S AUCTION

ELLIE MITCHELL SMASHES LONDON MARATHON FOR SOFT UK!

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My wife Susan and I decided towards the end of last year to take on a challenge. We like walking and have done a few walking marathons before so picked the South Coast Challenge; a 62mile/100km walk from Eastbourne to Arundel in 24 hours!

My cousin Adam Simpson had Edwards Syndrome and passed away on the 17th of February 2013. This year he would have celebrated his 21st birthday. Over the years I had looked on with admiration at the strength and courage shown by Adam, his parents and siblings. I remember seeing the fear and uncertainty that came with the early years and the development, laughter, fun and love that followedI was also aware of the invaluable help and support SOFT UK provided at various stages. So it made sense to us that we should walk for Adam and try and raise some awareness (and pennies) for SOFT UK.

I should say that neither of us are super fit. Like anyone else we try to be healthy but are far more likely to be found spending a weekend on the couch than in a gym. Taking on a challenge like this does require a bit of self-motivation, so we have been fairly strict in setting aside each Saturday for walking. We started six months before the big day, doing small walks of 6-8 miles before slowly increasing the distance. (Although we must fess up to the odd weekend off sitting in pajamas and eating crisps). Living in Glasgow, we are lucky to live within an hour of so many beautiful places.

A major personal benefit to this challenge has been the chance to see new places; the West Highland Way, Loch Venacher near Callandar or the Forth and Clyde Canal path. The unusually warm weather has made life a little harder of late, I can guarantee that the sight of two sunburned, panting and sweaty walkers sitting 2500 feet up Ben Lomond looking for a secret escalator is never going to be pretty sight. Another occasion saw us walking through an M.O.D training area when nature called. I stood guard and waited all of 30 seconds when Susan emerged from the bushes saying she’d hold on for now as she had discovered a grenade! But the good days vastly outnumber the not so good.

In seriousness though, our main motivation is never lost and Adam’s smiling face and positive attitude will be with us throughout. It will be with great pride that we wear our SOFT UK t-shirts and highlight, in some small way, the amazing work of SOFT UK and it’s volunteers.

If you have any spare change and don’t know what to do with it maybe just sponsor us at http://UK.virginmoneygiving.com/team/TeamEwan

TEAM EWAN TAKE ON TR ISOMY!

Fundraising

A Little Hope...Our daughter, Hope, was born on 27 November 2016. When she about 8 hours old she was taken to the neonatal intensive care unit. After the first day of doing a multitude of tests and liaising with specialists, no one knew what was wrong with her. All we knew was that her heart, kidneys, liver and lungs were not functioning properly. She was placed on a ventilator and began to have seizures. We felt totally helpless and could only pray and hope for the best.

We decided to call her Hope Tanusha Arends. Tanusha means ‘blessing’, suggested by her maternal grandmother. All we wanted to do was to take her home, but sadly, we realised the intensive care unit would became our second home.

On day 10 the geneticist delivered Hope’s diagnosis: a rare genetic disorder called Trisomy 18/Edwards’ Syndrome. Then came the devastating explanation... We began literally taking it hour by hour, not knowing if each one would be our last with her.

But God and Hope had other plans...slowly Hope’s condition improved and she graduated from intensive care. In December we celebrated Hope’s first Christmas together as a family, albeit in hospital. On 5th January 2017 we finally went home, to learn to deal with our new ‘normal’. It was so nice to finally be home with our baby.

We had our ups and downs, regular hospital appointments and a few scares along the way, but Hope was determined to prove the doctors wrong and pulled through it all. Her social calendar filled up with play dates, BBQ’s, family dinners and day trips to the seaside! We celebrated special milestones; birthdays, mother’s and father’s days and our personal favourite when Hope tried food for the first time! The best summer ever!

But in September 2017 Hope became suddenly unwell and was readmitted to hospital. I sat by her bed planning her first birthday party and a trip to meet her South African family. I was SO sure she’d be coming home. Unfortunately, she then contracted a chest infection and on Monday 23 October 2017, Hope’s little heart got very tired and just stopped beating...

Heartbroken as we were, we made sure Hope had a beautiful send off. The sun shone for our little girl. She now shines on us from heaven, in our hearts forever...the brightest star in our universe.

Meera Arends

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Fundraising

In December 2017, my friend Angie came to see me. Angie and I met five years ago when she did my make-up for my wedding. She is a highly regarded make-up artist with a passion for ideas. Well as it turned out….. Angie had an idea…

Angie wanted to launch her own range of lashes, named after Hope, giving a percentage of the profits to SOFT UK. Angie had been deeply touched by Hope and wanted to do something in her memory. I was totally overwhelmed by her gesture.

She suggested I get involved, for something positive to focus on after losing Hope. Together with my friend of over 20 years, Sim, we strode forward. After 5 months of research, product trials, endless conversations about logos, colours and box designs, we finally launched Hope’s Lashes on 7 May 2018!

As well as donating a percentage of our profits to SOFT UK, we aim to raise awareness about Trisomy 18 and the complexities that come with it. After my experience with Hope I really feel there need to be more conversations about these precious babies, who fight so hard to prove they are ‘compatible with life’.

Visit Hope’s Lashes on:Facebook: www.facebook.com/Hopes-Lashes-1711891572231220/ Instagram: www.instagram.com/hopes.lashes/

The Birth of Hope’s Lashes

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Fundraising

DonationsSOFT UK relies heavily on fundraising and donations for all of our work. It takes approximately £40,00 a year to raise the money we need to continue with our valuable work. Of course, with more money there are more possibilities…….

West Hill Primary School in Devon raised a fantastic

£380.10 with a dress down day and bucket collection! Huge thanks to Harry and friends!

Northampton School for Boys donated £600

Wyedean Sixth Form Centre Gloucester, Tutor

Group 7H sent £79.65

Many People Giving Brings in a LOT

The Board of Trustees would like to give a HUGE thankyou to all the families who participated in this

campaign. An absolutely massive £3585 was raised! This is a significant amount of money for

SOFT UK and will allow us to tackle some of our upcoming projects.

Kirwan family and Tina & Gary Miller in memory of Emma Kirwan, Mark & Gail Breen, Verity and Alan Mitchel. Angela & Nigel Lawrence , Johnson family in memory of Evie Stephen & Ann Scott JC and DW Coombs C Spellman , A.G. Richardson , David Rose in memory of Jonathan Janis Blackburn Jane Heydecker B. Bailey in memory of Angelita

We would like to say a massive to everyone who has sent us donations!

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Fundraising

In Memory Of:

• Ash Green Primary School in Halifax donated £165 in memory of Rose Veronica Flesher 29.12.16 - 12.4.17

• Crowsons Funeral Directors sent a collection totalling £249, for Mr & Mrs MacDonald in memory of baby Ines Rose who passed away 30th August 2017.

• Mrs Joan CHICK donated £100 in memory of her Grandson Mark.

• Duncan & Fiona Kerr donated £50 in memory of their son John.

• Sue & Jeremy Edwards donated £50 in memory of their daughter Sophie.

• Many Thanks to Everyone who donated at our June Family Day in Solihull, where £107.50 was raised!

If you send a donation through BACS or through one of our online donation pages, we do not receive any details about your donation. If you have donated in memory or support of someone and would like it acknowledged here please do get in touch on administrator@soft.org.uk

Fundraising and donation stories often make great articles for our newsletter or social media pages

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EASY FUNDRAISING – Donate while you shop!

Do you shop with Tesco, Sainsbury’s M&S or Argos? You can raise money for SOFT UK whenever you shop with them and 3000 other stores by using our fundraising website, easyfundraising. It won’t cost you a penny more and everything you buy will raise money for SOFT UK.

Fundraise for Soft UKSOFT UK depends heavily on fundraising and donations to continue its valuable work supporting families affected by Trisomy 13, 18 and related conditions! Every year we need around £40,000 to continue and develop our work. There are so many ways you can fundraise for SOFT UK. Here are some easy ideas!

NEW FUNDRAISING RESOURCES

Our amazing SOFT UK Volunteer Anna has created a fabulous new FUNDRAISING PACK to help potential fundraisers get organised. It’s packed with ideas, resources and links to make your fundraising easy-peasy!

You can download it from our website at www.soft.org.uk/system/cmsassets/457.pdf

AMAZON SHOPPERS – Raise money at no cost to yourself!

Amazon Smile is the fantastic new scheme from Amazon to raise money for charities. Follow this easy link and register to support SOFT UK. Each time you shop with Amazon Smile, SOFT UK will receive a percentage donation from Amazon. And it doesn’t cost you a penny!

https://smile.amazon.co.uk/ch/1002918-0

THE THREAD OF LIFE

Marilyn Palmer is selling her mini-novel ‘The Thread of Life’ in memory of her granddaughter Hollie O’Reilly, to raise funds for SOFT UK.

Please visit her page to find out more:https://mydonate.bt.com/fundraisers/threadoflife

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Fundraise for Soft UK Sponsored Events

Beautiful Commemorative Items from Connor And William

Do what you love and raise money for SOFT UK! Whatever your 'thing', turn it into a fundraising challenge for SOFT UK. Keen sportsperson? Or fancy giving something new a go? Skydiving anyone? Or something more relaxing like knitting, or baking! We work with well known online fundraising platforms to enable you to easily create your perfect challenge. It takes minutes to set up an event, which can be easily shared with friends and family, in your communities or even with your local press. Online fundraising maximises donations and it simplifies everything for you. Donations are collected on your behalf and paid directly to SOFT UK, so no pockets full of coppers or pesky banking. They even reclaim GIFT AID from your supporters, adding potentially an extra 25% to your total. It could not be easier, so start TODAY.

SOFT UK works with providers with no, or low, commission fees in order to maximise the donations you collect.

BTMyDonate charges no fees or commission, only card processing fees VirginMoneyGiving charges 2% commission on donations, plus card processing fees

You can also download our offline sponsorship forms to collect donations for your event. Please remember to return these to us so we can claim GIFT AID. www.soft.org.uk/system/cmsassets/446.pdf

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Allison has been making jewellery since 2007 and has worked closely with many families to create special keepsake pieces. Her jewellery can include the prints, scans, handwriting, drawings and more, of your loved one and even cremation ash if you desire, as well as any personalisation required. There are many different items to choose from on her website, but she is more than happy to work with you to help you create something unique and special, if this is what you prefer. All her pieces are pure or sterling silver and handmade from scratch in her home studio. Allison also offers a small range of other keepsake items eg wooden coasters, decorations, fabric items, which make lovely gifts for other members of the family and these were carefully selected to suit all budgets.

If you would like to discuss designs and ideas for special pieces for yourself, do drop her an email at allison@pastelprint.co.uk or browse her newly branded website www.connorandwilliam.co.uk . Use our special code TRISOMY and you will receive a 5% discount and SOFT UK will receive a generous 15% donated directly to us!

We have two vacancies for SOFT Trustees, so if you have every thought about getting involved, we would love to hear from you. The Trustees are responsible for the overall governance and management of the Charity, ensuring that we work within the requirements of the Charity Commission and OSCR. Trustees also have a responsibility for ensuring that SOFT UK’s families remain central to what we do, and we are therefore keen to have Trustees who can represent the families SOFT seeks to support. It does not involve a huge time commitment – there are approximately 4 Trustee meetings a year, sometimes these are via teleconference. We have fortnightly management calls, which trustees are invited to. If you think you could offer your time and would like to know more, email administrator@soft.org.uk and we would be pleased to talk to you.

We have two vacancies for SOFT Trustees, so if you have every thought about getting involved, we would love to hear from you.

The Trustees are responsible for the overall governance and management of the Charity, ensuring that we work within the requirements of the Charity Commission and OSCR.Trustees also have a responsibility for ensuring that SOFT UK’s families remain central to what we do, and we are therefore keen to have Trustees who can represent the families SOFT seeks to support.

It does not involve a huge time commitment – there are approximately 4 Trustee meetings a year, sometimes these are via teleconference. We have fortnightly management calls, which trustees are invited to.

If you think you could offer your time and would like to know more, email administrator@soft.org.uk and we would be pleased to talk to you.

Volunteering

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ResearchI N T E R N A T I O N A L T R I S O M Y 1 3 / 1 8 A L L I A N C E

ITA are a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18,). Their mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.

The ITA website includes research publications about medical interventions and outcomes for children with trisomy 13 and 18. Some articles describe examples of surviving children who benefit from treatment and surgeries, and live a happy and valued life. Translations of books are available on the website.

https://www.internationaltrisomyalliance.com/about-the-research.html

T H E I M P A C T O F A S I B L I N G ' S L I F E - L I M I T I N G G E N E T I C C O N D I T I O N O N A D U L T B R O T H E R S A N D S I S T E R S E R I C A B R O W N , J A N E C O A D , A N I T A F R A N K L I N F I R S T P U B L I S H E D : 2 7 A P R I L 2 0 1 7

It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau’s Syndrome) or Trisomy 18 (Edwards’ Syndrome).

Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood.

The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.

https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.a.38213

‘ U P H O L D I N G E T H I C A L D E C I S I O N M A K I N G I N C H I L D R E N W I T H L I F E L I M I T I N G I L L N E S S E S . " C O M P R C H I L D A D O L E S C N U R S 4 0 ( 4 ) : 2 1 5 - 2 1 8 G L A S P E R , E . A . ( 2 0 1 7 ) . "

Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.

https://www.ncbi.nlm.nih.gov/m/pubmed/29161160

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Research

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" K E E P I N G A L L O P T I O N S O P E N : P A R E N T S ' A P P R O A C H E S T O A D V A N C E C A R E P L A N N I N G . " B E E C H A M , E . , L . O O S T E N D O R P , J . C R O C K E R , P . K E L L Y , A . D I N S D A L E , J . H E M S L E Y , J . R U S S E L L , L . J O N E S A N D M . B LU E B O N D - L A N G N E R ( 2 0 1 7 ) . H E A L T H E X P E C T 2 0 ( 4 ) : 6 7 5 - 6 8 4 .

BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.

OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP.

RESULTS: Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.

DISCUSSION: This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5512998/

“ B E S T I N T E R E S T S ’ I N P A E D I A T R I C I N T E N S I V E C A R E : A N E M P I R I C A L E T H I C S S T U D Y . ” A R C H D I S C H I L D 1 0 2 ( 1 0 ) : 9 3 0 -9 3 5 .

B I R C H L E Y , G . , R . G O O B E R M A N - H I L L , Z . D E A N S , J . F R A S E R A N D R . H U X T A B L E ( 2 0 1 7 ) . In English paediatric practice, English law requires that parents and clinicians agree the 'best interests' of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature. New approaches to decision making are needed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739819/

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ResourcesTHE SCOTTISH COT DEATH TRUST HAS RELEASED SOME NEW RESOURCES FOR S IBL INGS : Rory's star is a book you can use to explain to siblings about the death of a baby Andrew's Rainbow Book is aimed at 'Rainbow Babies', children born into a family after the death of a child. www.scottishcotdeathtrust.org/shop

TRIS PROJECT :If you want to find out more about Trisomy conditions, we highly recommend these online modules by the TRIS project. They contain lots of information on the conditions, recent research, real family experiences, glossaries and downloadable resources. https://tris.siu.edu/modules/

FAMILY FUND:If you are raising a child with a disability or serious health condition in the UK, you may be eligible for grant from the FAMILY FUND. For further information on eligibility criteria and what they help with please visit www.familyfund.org.uk/

THE STORY OF. . . . . . . . . . . . . . . . . . . . . . . PERSONALISED CHILD LOSS BOOKS :A whole series of personalised baby, child and adult loss books to share with siblings to remember their loved ones even though they are no longer with us here on earth. https://www.personalisedchildlossbook.com/

NEWLIFE PLAY THERAPY PODS :Newlife offers the free loan of specialist toys to families who have disabled and terminally ill children. Play Therapy Pods can be loaned for 12 weeks. There are different categories of play pods to choose from, depending on the child's age, physical and learning abilities, and medical needs. The Play Therapy Pods are self-contained and are delivered direct to the family's door. To arrange a loan complete the application form available on www.newlifecharity.co.uk

CHROMOSOME K IDS L IKE ME is a sweet, fun story that takes something complex - understanding chromosome disorders - and compares it to something we can all understand - socks! This charming book is the perfect way to teach children (and adults!) about rare chromosome abnormalities and what makes the people who have them special. Written by the mother of a child with unique chromosomes and reviewed by a geneticist, this easy-to-understand book will warm your heart and help you understand chromosome disorders. It is the perfect gift for special needs families, including parents, grandparents, siblings and children with rare chromosome conditions, and an excellent teaching resource for professionals working with them. www.amazon.com/Chromosome-Kids-Like-Annette-Fournier-ebook/dp B07D1ZBTM7/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1528366188&sr=8-1

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We are Here to Help!I f you , or someone you know, requires in format ion or support p lease don ’ t hes i tate to get in touch w i th us on enquir ies@sof t .org .uk We have a fu l l y t ra ined team of support vo lunteers , a l l Tr isomy parents themselves , who w i l l ass is t you whether or not you are newly d iagnosed , car ing for a ch i ld or have exper ienced a bereavement . Our enquir ies l ine i s s ta f fed seven days a week , so you can be conf ident o f a t imely response .

For a l l o ther enquir ies , Demi w i l l be de l ighted to ass is t you ! Her emai l address i s admin is trator@sof t .org .uk

SOFT UKREGISTERED CHARITY ENGLAND AND WALES 1002918 , SCOTLAND SC0433441 . 48 FROGGATS R IDE , WALMLEYSUTTON COLDFIELDWEST MIDLANDSB76 2TQ

SOFT UK WOULD L IKE TO THANK OUR FUNDERS , W ITHOUT WHOM OUR WORK WOULD NOT BE POSSIBLE :