Heartline newsletter autumn/winter 2022

Wetsuits for Heartline Families

It might not be so warm outside but we know that means retaining body heat is even more important for children with heart conditions who may be swimming during the autumn and winter months.

Children with heart conditions often can’t maintain their body temperature when swimming or playing in water, even in heated pools, but we don’t think this means they should have to miss out!

We offer a free wetsuit for a child who is a regis tered as a member on the database. All applicants will be checked by the Office before wetsuits are ordered and sent out. Visit the website for detailed information.

Join us!

Do you have a child with a heart condition?

We can offer you support and a chance to share your fears, concerns and hard won knowledge with other families. We can provide - subsidised holidays, - wetsuits, - an activity break for heart children, - discounted holidays on caravan parks, - a free copy of Heart Children book, - children’s colouring books, - dental information and much more. For information about how to join (it’s free) see our website at www.heartline.org.uk and complete the online form.

www.facebook.com/heartlineUK www.twitter.com/heartlineUK

We’re all going on a WINTER holiday

Heartline has two caravan holiday homes, which are open to our registered families at a heavily discounted rate. These caravans allow our families a much-needed break with their heart children at times when they need it the most.

Our families return time and again to stay at our beautiful sites in Oakdene and Mabletho rpe, and we are proud to repeatedly receive glowing feedback about their stays. The caravans are extremely popular and booking is taking on a first-come basis through the Bookalet system.

Mablethorpe Caravan

One of our caravans is on the Golden Sands Park, Mablethorpe, Lincolnshire see: Golden Sands and accommodates eight people. Our caravan is situated near to the facilities of the park but still not far from the stunning beautiful beach.

Oakdene Caravan

Our other caravan is Oakdene Forest Park, in the New Forest – see: Oakdene – and accommodates six people.

The Park is set in 55 acres of beautiful park land bordering the Avon Forest and unspoilt river meadows.

Our Oakdene caravan is near to the leisure facilities including a heated indoor pool with flume and toddlers’ beach area, heated outdoor pool with toddlers’ pools and sunbathing area, table tennis and pool tables, crazy golf, fishing, clubhouse facilities, supermarket and off-licence.

There are many entertainment parks in the area.

Oakdene caravan pictured below

There is loads to do for all the family whether it is swimming in one of the pools or taking part in the sports and leisure activities on offer, so there will never be a dull moment.

If you would like to book, please visit www.heartline.org.uk/caravan-holidays for more information.

What will it involve?

• You will be asked to complete some questionnaires online regarding your experiences of loneliness and of your social relationships

• You will be randomly allocated to an ‘intervention’ group or a ‘waitlist’ group

• If you are in the ‘intervention’ group you will be sent information about relevant online peer support and asked to keep a weekly log of whether you use these groups and forums

• If you are in the ‘waitlist’ group you will be directed to the same information three months later and asked to complete the same log

• You will be contacted 3 and 6 months after signing up to complete the questionnaires again

• All participants that sign up to the study will be entered into a prize draw to win one of 10 prizes of a choice of a £20 Amazon voucher or a £20 donation to a charity

Want to know more?

This research is being supervised by Dr Sophie Bennett, Clinical Psychologist, Great Ormond Street Hospital Institute of Child Health and Dr Marc Tibber, Clinical Psychologist, UCL

This project has been ethically approved by UCL Research Ethics Committee. Ethics approval reference: 22125/001

If you would like to be part of this research or find out more, please follow this link: https://uclpsych.eu.qualtrics.com/jfe/form/SV_aibsDRzGZtqiYXY

If you have any questions, please email: katrina.walsh.17@ucl.ac.uk

Are you the parent of a child with a long -term condition or disability?

We want to understand the usefulness of online peer support groups and forums

We are looking for parents and caregivers of children or young people with long term conditions or disabilities to take part in a study looking at the usefulness of online peer support groups and forums for reducing loneliness

Talking Matters

Do you need to talk to someone?

Here at Heartline, we know the strains and stresses of being a heart parent and caring for a child with complex needs and conditions can be emotionally exhausting.

As such, we are working closely with our friends at Little Miracles to offer pay-what-you-can-afford counselling sessions to registered members of Heartline Families.

A helping hand when you need it

We understand that the support and talking therapy can often be a costly business that places it out of reach for many mums and dads when it’s exactly what they need.

As such, you can now apply for counselling with our qualified psychotherapists to benefit from a range of therapies that suit your individual needs, i.e. art therapy, talking therapy, CBT, etc.

To get the ball rolling, please click here for more information and form to apply for counselling sessions:

https://bit.ly/3A8UFOV

Dental Care and Heart Children fun!

We have a series of free booklets and guides to help ease the journey of your heart child to outpatients and hospital. Have you got your copy?

The guides are easy-to-read with pictures that can help to distract attention when it’s needed the most.

Choose from:

□ Hello, Baby Bill □ Growly Bill and the Outpatients

□ Dental care for heart children

Please get in contact to order your information leaflet.

Send an email with your details to intouch@heartline.org.uk with the title of your chosen guide and we’ll send them out to you.

Simon smashes it!

Heartline secretary, Simon, has completed this year’s London Marathon and raised £655 to help support our families.

The 2022 London Marathon was the 42nd running of the annual London Marathon on 2 October 2022. Due to the COVID-19 pandemic the race was postponed from April until October to maximise the chances of a mass participation event.

“We went to lots of scans in London as the doc tors gave us a very low chance of her surviving pregnancy, then birth and finally surviving for long after birth.

“She was born in St Thomas hospital and was in NICU and intensive care for 10 days before being sent home as she did so well in hospital.

Stronger

Simon completed the marathon in eight hours and 15 minutes.

“I took part in the London Marathon on behalf of Heartline Families charity who have helped us a great deal over the last 8 years due to Amelia’s heart condition.

Found something strange at the scan

“When my wife, Ali, was 20 weeks pregnant we went to our scan and they sent us to St Thomas/ Evelina for extra scans as they found something strange.

“It turned out that she had Dilated Cardiomyopa thy, which is an enlarged heart, as well as mitral valve regurgitation.

“She has since gone on to prove everyone wrong and got stronger every year.”

“Heartline has provided lots of support to us, including supplying free wetsuits along with let ting out two caravans to families of children with heart conditions along with offering lots of differ ent away days and events to families as well.

Lots of support

“I am now the secretary of Heartline Families, along with running and organising the two cara vans, one in Mablethorpe and the other Oak dene.”

GET INVOLVED!

Would you like to help support our families?

Please see our website for ways to get involved.

Super Sebastian!

When Julie Martin became pregnant with her baby, Sebastian, she had no reason to think anything was amiss or that anything other than happy times lay in store for her family.

Sebastian was three months old when doctors dis covered he had two holes in his heart.

He was being treated for bronchiolitis that had developed from a bad cold, but it wasn’t until he collapsed at home that he ended up in his local hospital.

Sebastian was struggling to feed or put on weight

In December 2016 he became very ill and, after collapsing at home, he was rushed by ambulance to our local hospital. He spent his first Christmas there which was an extremely scary time for all the family and a lot for us to take in.

Sebastian’s condition meant that his lungs and heart had to work harder. This, in turn, is what caused Sebastian to have trouble feeding and putting on weight.

We found out after three days in hospital that Sebastian had a heart murmur and needed investigation.

When Sebastian had the echo, we were told he had a Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD). Scary when first hear these words as you are in the unknown!

We struggled to explain to his sister

So much goes through your head. We were very concerned about what our son was having to go through, but we also had our then two-year-old daughter to think of. We struggled to explain to her what was happening and to make sure Christmas was still fun for her.

During that difficult Christmas, we felt reassured when Sebastian was transferred to Evelina London.

Once we were referred to Dr. Aaron Bell at Evelina London, we knew we were in safe hands. All the staff were extremely helpful and calm and were happy to answer any questions or concerns we had.

Safe hands

Sebastian had open heart surgery at Evelina Lon don when he was four and a half months old, and the hole was successfully repaired.

Scar tissue

Later that year, however, he started to suffer from breathlessness. Dr Bell and the cardiology team ran multiple tests and discovered that scar tissue (Subaortic stenosis) had formed in Sebastian’s heart, which was causing a narrowing of the artery.

We faced more worry when it was decided that Sebastian would need another operation.

The fear we had didn’t go away

In July 2018, at 22 months old, he underwent his second open heart surgery to cut away the scar tissue.

Even though we’d been in the position before and had confidence that the surgery would be a suc cess, the fear we had the first time around, didn’t go away.

However, fewer than 24 hours after the surgery, Sebastian was running around the playroom on the ward like nothing had happen.

His recovery has been astounding. He’s just like any other little boy. You wouldn’t know that he’d been through two huge surgeries at such a young age.

Started school

He is staying on six-monthly check ups for now. He may need further ohs. He has a kink in his heart that means the suprasternal notch pulses more at times. His body can’t regulate tempera ture.

Sebastian started school last year and overall he is doing okay and is well. He can’t regulate body temp and has to have a wetsuit for swimming as gets too cold.

He doesn’t overly like talking about his scar/ bump. He is bit behind developmentally and has had speech therapy, and he struggled with lock down, but overall he is happy.

Keep in Touch

Do we have your most up-to-date contact details? Please complete the form on the website to update us, or email intouch@heartline.org.uk or contact us by using the details below.

Medical Terms

We know that it can be tricky to understand all the words and medical terms used in the heart world. So we’ve put together a list of terms and their meanings to help you. Please see: www.heartline.org.uk/news/saywhat

Heart Children Book

A practical handbook for parents…

For the past 30 years the Heart Children book has guided parents and families through the heart condition that children may be born with or acquire, the treatments available, and how to deal with the many medical and social problems that they may have to face.

How to get your copy

Single copies are free to Heartline Families. Single copies £7 (plus P&P). Please contact intouch@heartline.org.uk for information about buying your copy.