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Review 2014 - 2015

Our Second Year In Review Inside: Real Life Experiences PGL Holiday Fun Caravan Adventures Review: How did we do? And Much More


Heartline Families in 2014-15

How did we do?

Heartline Families Treasurer, Denise Hadow, takes a look in her rear-view mirror at how we’ve spent our time and money during the last year.

What’s inside 11-12 The world’s youngest heart surgery patient

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Heartline Families in 2014 - 2015 How did we do?

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What you need to know about Heartline Families

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Amazing Keira

15-16 Braveheart Leo’s Journey

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New website launch - we need you!

17-18 Let’s Get Physical - PGL Booking Information

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Water Babies!

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Welcome the new Heartline Families Team

19 Help us to help them

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Lola’s Journey

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News in brief

9-10 Let’s Get Physical Heartline Families is edited by Natalie Persoglio Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk

TERMS USED: Some of our stories feature medical words. If you don’t understand the meaning of a medical term used, please see www.heartline.org.uk/termsused for a complete directory or the ‘terms used’ section at the end of our stories.

Heartline Families has had a good financial year from November 2014 to October 2015. We sustained the provision of services throughout 2014-15 with income of nearly £88,000 including caravan capital income, and expenditure of around £75,750 including both caravan purchases. So, there was a surplus of £12,000, which isn’t really a surplus as we have web development costs of £8,000 and costs for the new edition of the Heart Children book, committed but unpaid at 31st October 2015.

As part of the infrastructure development, the future fundraising strategy is to develop a nationwide group of Volunteer Fundraisers, together with or including our outstanding supporters who initiate so much on behalf of Heartline children, to improve and maintain general funding, with a Volunteer Co-Ordinator to work with volunteers to achieve long term income streams. So, anyone who would like to help, please do email Mehul at fundraising@heartline.org.uk.

Caravan replacement expenditure amounted to £43,000 funded by grants and donations from Families. We have also received wonderful donations and volunteer support for the running of the caravans for holidays for families with a child with a heart condition. Other expenditure was about £32,600 providing benefits as set out in the objectives and services for the year.

The investment in a new website and forum is aimed at attracting interest in the site and providing information on Heartline Services and Fundraising initiatives, as well as supporting the Forum service.

The fundraising initiative set up in July 2014 was to raise, in the main, the funding of at least one caravan replacement and to drive for as much income as possible for the other actions required for sustainability, such as a new secure platform for the Parents’ Forum as part of a redeveloped website.

I am planning to soon retire from the role of Treasurer, as soon as we have someone in place. I will be taking a more limited role and, since I am already involved in fundraising, am preparing to continue with this in support of Mehul and shall remain as a trustee for the time being. With best wishes for 2016!

Both caravans have been replaced. The objective to redevelop the website and set up a secure Forum has been actioned and the design stage completed with the development agreed, to be completed in the New Year. The project time frame was extended beyond the financial year end to ensure that the structure and form of the website was workable and sustainable into the future. Project funding for the Activity Weekends is a high priority for 2015-16 as well as sustaining general funding. A grant of £10,000 general funds was made by The Edith Florence Spencer Memorial Trust in 2014-15 for general funds, for which we are most grateful. It is unlikely this level of individual grant for general funds will be achievable again in 2015-16, but we shall do our best.

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MedicAlert: Life-saving Accessories In the event that your child needs emergency treatment, the MedicAlert emblem is engraved with your child’s medical conditions, personal identification number and MedicAlert’s 24 hour emergency number. When needed medical professionals can immediately get vital information by a telephone call from anywhere in the world. These medical records help medical personnel to make a proper diagnosis and not offer treatment which could be dangerous. The records are updated whenever you send new information. HeartLine is now an official partner of Medic Alert and can offer a discount on a first bracelet of just £19.99. This discount is for members only and can be obtained by contacting admin@heartline.org.uk (please put MEDICALERT in the subject line).

What You Need To Know About Joining Heartline Families Register now - it’s FREE If you haven’t yet registered with Heartline Families, it really couldn’t be any more simple and it’s free, so join our other 2,900! Just visit www.heartline.org.uk/joinus and complete the online form.

Joining Benefits Once you have been accepted as a family, you will be invited to our closed and private group on Facebook, where you can request: -

information about our caravan breaks a free wetsuit for your child free child places on our activity holidays the Heart Children book (the heart bible!) support from fellow mums and dads stacks of information about dental hygiene, fundraising, hospital vists, the magazine and - access to the forums, which carry a wealth of advice and discussion. You will also receive a copy of our regular newsletter, which is full of stories, news and innovations in the heart world. More information at www.heartline.org.uk www.facebook.com/heartlineUK www.twitter.com/heartlineUK So, what are you waiting for? Come and join Heartline Families.

Join us on social media Come along and join us for up-to-the-minute information, news and discussion - all in your newsfeed. Facebook gives you the perfect opportunity to talk and become ‘friends’ with parents and families in similar situations with children who have similar conditions. Make sure you ‘like’ our page at www.facebook.com/heartlinefamilies and also on Twitter www.twitter.com/heartlineuk.

Amazing Keira

By Michaela Robertson

As we went for our routine 20 week scan, we were excited to have it confirmed that we were to have a little girl. It was the happiest day of our lives after having our two sons Kaiden 4 and Bayley 2. We were scanned for a couple of hours. We started to get a little worried as they jumped from room to room to get second and third opinions. The person carrying out the scan told us that they couldn’t be 100% sure and that they needed to get a cardiologist to carry out an additional scan. We were called back two weeks later where I was scanned for another two to three hours.

The news was devastating

They told us that our baby girl had severe heart defects and would need full open heart surgery if she was born alive and healthy enough. Our whole world came crashing down. We were also told that she had a 1 in 10 chance of being Down’s Syndrome and also possible cystic fibrosis. We then had to be scanned every 2-4 weeks to see if she was growing properly (at 32 weeks she was estimated to be 4.5lb at birth; she was a huge 8lb 5oz) and to get a confirmation of the prenatal diagnosis.

The biggest decision of our lives

At 21 weeks we were given three weeks to decide if we wanted to continue with the pregnancy or terminate our unborn baby girl. We declined the offer of a CVS test to ascertain if she was Down’s Syndrome. We were warned of the risks of miscarriage if we continued with the pregnancy. We also had blood tests to rule out cystic fibrosis.

Our baby girl is born

We hit the 30 week target and it was planned that baby would be born by an elective C-section in Glasgow’s Southern General Hospital. She would then be transferred to Yorkhill Sick Children’s Hospital within 24 hours. At 38 weeks and five days we were admitted to the Southern General for pre-op assessments and stay the night to then have the C-section the following morning. On the 28th March 2013 at 2pm, I was taken down to theatre where it took two hours to get our baby out (she was stuck in my pelvis and ribs). She came out screaming, pink and healthy. She was born 8lb 5oz and 48cm long.

Rushed to intensive care

At nine minutes old, our baby girl was rushed to PICU with severe respiratory distress; her heart and lungs had stopped. Technically she had passed away for 25 minutes. They gave her heart massage and CPR to try to bring her back to us. They were about to give up hope and let her go but on the last attempt of trying and, after a long 25 minutes, they managed to bring her back. They performed an emergency septostomy procedure at 40 minutes old. They didn’t even have the time to ask for our consent as the surgery was so crucial to her survival. She was placed on a cooling program until her open heart surgery. She was on numerous medication through infusions, full flow ventilator and catheters in.

Day Eight

On day eight she was scheduled for her surgery, she needed to be put on a heart and lung bypass machine. Her surgery lasted almost 10 hours. We were told to wait until she had been anesthetised then were told to wait for further news. We returned to our room, at Ronald McDonald house, after five or so hours and waited for any news. Finally, 10 hours later we got the call. Surgery had been a success and uncomplicated from her surgeon’s point of view. She was off bypass. They told us they needed an hour to take her back up to intensive care and set all her medications and ventilator; it was the longest hour of our lives.

She opened her eyes for the first time

Finally we got to see our baby girl; nothing had prepared us for what we had to see with her dressings and the banks of medicine all around her. A few days later our little girl opened her eyes for the very first time aged two weeks old. I was a mess it was such an emotional day and I’d finally got to hold her. A few days later, she had an MRI scan, which revealed patches on her brain. We were told to prepare for her to have brain damage and some kind of learning difficulties (so far she is fine - a little behind but not by much). We were also told she had retained fluid on her heart and lungs. They explained that if this didn’t disappear with medication she would be back in theatre for another operation.

A sense of relief

Two weeks and five days old, we were told she was well enough to be transferred to Ninewells, our local hospital. She was transferred there so that they could establish her feeding as she was still on an NG feeding tube. Within two days we were back home. I felt a sense of relief, all my family together for the first time in weeks. Two months later and the fluid around heart and lungs had gone. The medications had worked!

Very happy

She had a few cardiologist, paediatrician, health visitor, midwife appointments. At the last appointment we were told that they are very happy with her and she doesn’t need to be seen until she turns 2 ½ years old. Wow that’s an amazing 12 months with our girl with no medical intervention heart-wise. Also she has now been signed off from the paediatrics/development team as they are happy with her progress so far; there will be a follow up in a year. Continues...

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Amazing Keira

We are all amazed by her. Now Keira is a happy little 21 month old little girl. She was on two inhalers up to six times a day for vocal chord and lung damage due to her wheezing. Unfortunately, they didn’t work and she has now been diagnosed with Laryngomalacia. I’ve never seen such a happy baby. She’s sitting up all by herself, she has weaned really well, she is walking and recently started talking.

12 Month cardiology appointments

Now at 21 months old, she had been given the all clear for 12 month appointments. She is walking, currently copies everything you say and pretty much independent in her own little way. She’s amazing.

TERMS USED

Laryngomalacia - the most common cause of stridor in infancy Bypass - a pump and an oxygenator to maintain blood supply to the body while the heart’s action is stopped. Septostomy - a hole created in the septum. PICU - paediatric intensive care unit.

Heartline Families Collection Boxes for home collections and raising funds at your events With your help collection boxes can raise us a lot of valuable income. Small amounts from many collectors add up to a lot. We can send you a collection box to keep on the side in your house and whenever you have a few coins you can spare just pop them in the box. You will be surprised how it accumulates. When you have a full box then break it open and pay into your own bank and send us a cheque or bank transfer to: Heartline Families, Lloyds Bank, Sort Code 30-96-96, Account Number 59276960 for the amount you have saved up. Clearly mark the transfer or cheque with your name and ‘Coll Box Donation’. Contact HFtreasurer@heartline.org.uk and we will send you a Giftaid form at the same time. We can send you collection boxes for your fundraising event or to place on an agreed site. We need to record where the sealed boxes are placed and to follow a simple procedure to oversee the collection and banking of the proceeds, issuing a receipt and thank you to the siteholder as required. Please contact our Trustee Treasurer on treasurer@heartline.org.uk and we will arrange for sealed and numbered boxes to be sent to you and to register the necessary details on our records. This is straightforward to do and our Treasurer will follow up at an agreed or appropriate time. Good Luck and Thank You for your help.

We are delighted to announce the relaunch of our Heartline Forum when our new Website is up and running in the New Year! The Forum will be set up in as secure a way as we possibly can, to ensure that information and discussions are available to those who need to and wish to share information to support each other in a time of need. In order to make the most of both the Website and Forum, we need to populate them with information and stories about how your wonderful heart children have coped with whatever comes along. The content will be a mixture of support and encouragement from parents and families, for parents and families. The Website (not the private forum) will be accessible to our supporters to see what we are doing and to donate time or services or money, as they so wish. We will be putting more information into the Spring Newsletter and on the website once it is released. Meanwhile, please do let us know if you can help in any way Please talk to Val Thubbron about the set-up of the Forum on familysupport@heartline.org.uk Please talk to Mehul Nathwani about information and stories for the new website on fundraising@heartline.org.uk Please liaise with Natalie Persoglio if you are able to spare some time and expertise to support the management of the website on trustee1@heartline.org.uk

December 2015 | Heartline Families 5

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Water Babies!

In Summer 2015, we welcomed a new team!

One mum and dad tell us how our FREE wetsuit has helped their daughter enjoy the water... “Our three year old daughter, who has Tetralogy of Fallot, is such a water baby and this is all thanks to her gorgeous pink wetsuit from Heartline keeping her warm and enabling her to play for ages in the water.

grateful that we had her wetsuit from Heartline as this enabled her to spend a long time building sandcastles in the sand, running into the water and jumping in the waves.

Our daughter goes to swimming lessons every week and although the pool is heated she also needs a wetsuit to enable her to remain warm in the pool throughout the half an hour lesson. She has actually just started swimming independently and to be honest we never realised this would be possible at her young age and with her cardiac condition. We are so proud of her.

We are so grateful to Heartline for providing us with this gorgeous pink wetsuit and we hope that Heartline is able to continue to provide wetsuits for cardiac children so that other cardiac children have the opportunity to be able to enjoy water as much as our daughter does.

Recently we went to the seaside and our daughter could not wait to get into the water, despite the partly cloudy weather and so we were ever so

FREE Wetsuits For Heartline Families

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! Heartline Families offers a free wetsuit for a child who is registered on our database. All applicants will be checked by the Office before wetsuits are ordered and sent out. Please send the following information via email to admin@heartline.org.uk

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Thank you so much Heartline.”

Claire and David Barrow

The Team Above left: Andy Wardle Clinical Relations Adviser Above right: Hazel Greig-Midlane - Executive L-R Clockwise: Mehul Nathwani (Fundraising), Denise Hadow (Treasurer), Linda McQuaid (Chair), Natalie Persoglio (Trustee), Val Thubborn (Trustee) Heartline Families welcomed some brand new faces to the dedicated team, at a trustees’ meeting in London in summer 2015. Our new Chair of Board of Trustees, Linda McQuaid, joined us. She is a GOSH trained children’s nurse who now works as interim NHS manager, currently at Surrey & Borders NHS Foundation Trust where she is responsible for children and young people’s services. It was Val Thubbron’s first meeting as Trustee with Family Services lead. Two new trustees were elected: Mehul Nathwani, Fundraising lead, and Andy Wardle, Clinical Relations lead. Denise Hadow is our treasurer and Natalie Persoglio our marketing and pr adviser. Linda McQuaid said: “It’s an exciting time for all of us. We’re currently working on our aims and goals for Heartline over the next few years. We are focusing on how we can give our families the very best possible support in all areas. Hazel has achieved some incredible things for Heartline and I look forward to continuing to help us succeed in our aim to support all heart families, wherever they may be. I’d very much like to extend our thanks, on behalf of the team and our families, to Hazel for her dedication and passion for Heartline over the years - without her we wouldn’t have been able to help our families through some of their most difficult times.” Hazel G-M stood down from the Board of Trustees but will continue to work as Heartline Executive and adviser until the spring:

Please put ‘wetsuits’ in the subject line, or call 03300224466 Tell us: - Name and address of parent - Name and age of child - Size (see information below) - Preferred colour choices (see below) Classic baby wetsuits come in sizes 0-6 months, 6-12, 12-18, 18-24 months, 2-3, and 3-4 years. Please tell us your first and second preference for colour: pink, black, red, aqua, navy For older children (or larger 3-4 year olds!) you need to measure around the largest part of the child’s  chest and from neck to crotch in inches. Colour choices vary.

“I have been involved with Heartline since 1983. I was working for the Government in press and publicity – largely interpreting legislation for the bewildered public, having previously worked for a research council, interpreting research for the bewildered public. Since the (pre-internet) public were bewildered by children’s heart conditions, my son’s AVSD, aortic stenosis and bradycardia gave me ample opportunity to research and explain these problems to other families – through magazines, articles for the press, Heart Children and, later, websites. I have retired several times – starting in 1996 (early retirement of course), then from chairing government recruitment centres, then from Childrens’ Heart Federation, then from London Borough of Lewisham Marketing and Communications in 2008. Since 2010 I have been a Heartline Trustee, Vice-Chair and Chair, and with the help of John G-M, run the Heartline Office from our home of forty two years. I have now stepped down from the Board of Trustees, but will be available to offer advice and support. And not forgetting the wonderful volunteers who make it possible for us to support our families to the best of our ability.”

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Let ’s Get Physical!

Our annual PGL adventure weekends for heart children and siblings go with a swing and here are the photos to prove it!

2015’s PGL Adventure with Kevin Ford PGL 2015 proved to be yet another successful and safe year, and it was great to see a mix of new faces among some of the old faithful at the heart children weekend, at the very end of July. Our usual activities included kayaking, raft building, quad bikes again this year (always a winner), rifle shooting (or missing in some cases this year), the giant swing over the river (and a lot of huffing and puffing to pull everyone way up into the sky) and the usual evening campfire with raw / toasted / flaming marshmallows on the Friday for everyone to get to know each other and perhaps how good or bad their coordination is. But not me, I’ve got the camera... Courtney our ‘Groupie’ this year introduced some new activities (50-50) in the main house, bringing out some team work and creativity and acting skills to a new level (high or low, I’m not sure...). Where we are able to normally adapt our schedule to the needs of the children, I can’t remember why, but we tried the challenge course this year and with a little bit of huffing, puffing, laughing and sliding everybody did well, even me taking the pictures and videos. Showing that we have not tried it all and still enjoy new experiences after perhaps 15 years of Heartline providing the weekends for heart children and their siblings on a dedicated weekend for them too.

What did the kids think? “It’s nice to spend time with people who have the same heart condition as me” we all had new people – g n ti e e m n fu “It was mmon” something in co

“GO! It’s great fun and yo u will meet lots of new friends!” e away from hom g in e b d ye jo n de “Lots of fun an g awesome” doing somethin “The leaders were fun and didn’t push us to do anything we didn’t want to do” “It was important that I got an opportunity to do things I never normally get to do” m all”

em, I liked the

ith th “Great being w

“Really fun and an exce llent experience – I feel more confident” f my life so far”

rience o “The best expe

“I liked everything!”

By Kevin Ford, PGL Leader for Heartline Families.

Book your place on the PGL weekend for August 2016!

Abseiling, kayaking, zipwire and survival! We love it all and so do our families and that’s why we’re planning to do it all over again next year. So make sure you book your child’s place early to avoid disappointment! SEE PAGES 17 and 18 FOR MORE DETAILS ABOUT THIS YEAR’S PGL AND A FORM TO APPLY.

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The World’s Youngest Heart Surgery Patient By Fay Murrish

“We haven’t got time, go go go!”

With my huge medical team around me, we were ready to save our baby girl; the whole situation was surreal. I couldn’t believe it was all happening to us and it all felt like a film on TV. Chanel was born at 9:44am on Monday 24th February 2014. When she was born they quickly lifted her up for me to get a glimpse of her. She was beautiful and so tiny. She looked so much like her brothers and all I wanted was to grab hold of her and never let her go. This wasn’t possible and within seconds Chanel began to gasp for air, she turned blue and became very limp and lifeless in the nurse’s arms. Not even having time to weigh her, her surgeon shouted “We haven't got time, go go go!”

The room became silent – I hadn’t even touched my baby girl Baby Chanel Murrish was just one minute old when she became the Guinness World Record holder as the youngest person to have open heart surgery in the world. Her mum, Fay, tells us the ups and downs of life with her. We found out at our routine 20 weeks scan our baby girl had a heart condition. This was later confirmed by an echo scan at Newcastle RVI, where we were told she had only half a heart; a rare CHD congenital heart defect called HLHS (Hypoplastic Left Heart Syndrome). By 30 weeks pregnant it would turn out to be the rarest form of it.

1 in 5000

We were told HLHS affects roughly 1 in 5000 newborns and is more common in boys. They also told us that HLHS babies usually have a natural delivery, although the baby sometimes need a drug at birth to keep the ducts open to allow the baby to survive until the first open heart surgery, which is usually at a few days old. HLHS babies need three open heart surgeries: the ‘Norwood’ at a few days old, the ‘Glenn’ between 4-6 months old, and the ‘Fontan’ between 3-5 years old. We were told the risks were high and that, in some cases, life expectancy was low.

A severe case

Chanel’s case was severe, as she had also been born with IAS (Intact atrial septum). IAS affects roughly 6% of HLHS cases and there is only around 5 affected in the same was as Chanel in the world. Because of this, they told us she needed to be born by caesarian in adjoining theatres for immediate surgery. Her survival rate was considerably less than a typical HLHS case and because of the rarity would be one of the only caesareans performed at Newcastle Freemans. She would be born in a cardiac theatre and would be one of the few babies to have surgery immediately after birth. Because of the IAS complication, we were told there was a greater chance she could develop lung damage.

Three options – a difficult choice ahead

We were given three options. The first was termination of pregnancy. The second to go ahead with the pregnancy, natural labour and let her pass away without intervention - in our arms. The third was to proceed with the pregnancy, a caesarian labour and all the above surgical procedures knowing the risks. We knew we would choose the third and, no matter what the facts were, we wanted everyone to do their best for her. We had every faith in the team at Newcastle Freeman.

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The room became silent and empty. Without even being able to touch my baby, they had whisked her away and she was gone. Chanel was taking into the adjoining theatre for immediate open heart surgery. This was the quickest time in which major surgery had ever been done and Chanel becomes the youngest open heart surgery patient in the world.

Four hours later – a photograph

Four hours later we were still waiting to hear if she was alive and how her surgery was going – it was agony. I begged my anesthetist to find out what was happening. She brought me back a photo. Our princess had made it. Her surgery had gone as well as possible. She was on a life support machine, stitched back up. Once they had finished scanning her and they promised they would push her past me, in recovery, on her way to intensive care.

Sedated and ventilated

Chanel was ventilated, sedated and paralysed. She had wires coming from everywhere. As much as you try and prepare yourself to see your child critically ill it is impossible. The next day I was able to hold her for the first time through a jungle of wires and tubes. Chanel was able to meet her two big brothers too. All we could do was sit by her side, hold her hand, talk to her and pray for improvement.

She opens her eyes

Six days later they weaned her sedation medication a little and she opened her eyes for the first time. Chanel could not breathe at all for herself and was stuck on life support. We had her christened and then signed consent forms (with no other options left) to prepare her for her second open heart surgery the Norwood Procedure. She was just seven days old at this point. As Chanel was very sick and going into her Norwood already on a ventilator, we were prepared for the worst and the very high possibility she would come back on an ECMO machine.

We kissed her head

My husband and I pushed Chanel along the corridor from PICU to the theatre doors. We kissed her head

and told her how much we loved her and that we would see her soon. We cried, talked and walked the hospital grounds, not wanting to be too far from our princess. It was more than seven hours later when we finally got the call to say she was okay and her surgery had gone well. Chanel did not come back on ECMO and surprised everyone.

Recovery takes time

She was ice cold to the touch and her chest was left open. Chanel had to be put in a private cubicle to reduce the risk of infection because of this and it was ten days before we could finally take her back to theatre again to close her chest.

How we coped with life

We had to learn to take each day at time, appreciate every day with our new daughter, taking baby steps of improvement, juggling hospital life and home life. My husband and I and spent our time split – one of us would be at home caring for our boys while the other stayed by Chanel’s hospital bed. We would swap every couple of days and only see each other in passing for what turned out to be more than three months.

A heart rate of 240

Things were going steady but the night before Chanel was meant to move down from intensive care to high dependency at three weeks old, she gave us a big scare. We were awoken at 2am with a heart rate of 240! She crashed, needed to be resuscitated and given shock plate treatment on her chest. She was placed back on life support and after this Chanel developed a rhythm problem and needed an external pacemaker for quite a while. We later found out that she had suffered a stroke. She eventually made it to high dependency on a pacemaker after five weeks in PICU. Her vocal chords were damaged, as she had been resuscitated, so her cry was silent for a long time. We had ups and downs and eight trips to theatre during her first hospital stay, but Chanel was finally discharged home for the very first time when she was three months old.

Glen Procedure

Apart from two hospital stays, one for oxygen due to a cold and another for a heart catheter to check her pressures. We had the most amazing family times and Chanel got to bond properly with her brother. Then on the 26th August 2014, the time came for her next stage and 3rd open heart surgery. Her surgery went well, although her pulmonary arteries were narrow and needed some ballooning. She was ventilated for three days, suffered low saturations, pain and headaches from the new route of

circulation. It was so much harder to hand Chanel over and put her through more major surgery after having her home and her looking so well. Although Chanel took longer than usual to recover from her Glen Procedure, she was discharged three weeks post-surgery.

Moving forward as a family

In follow-up clinic she was discharged for six months! This is our biggest time away from the hospital. We still have community nurse, dietician, speech and language, gastro team and physio to help with all her other needs but, all in all, she is doing amazing. In pregnancy, she was first given a survival rate of 20% but by 30 weeks into pregnancy this dropped drastically. Since then she has made medical history in becoming the youngest open heart surgery patient in the world! Fought through ten trips to theatre, three of which were open heart surgeries. Chanel will need more heart surgery in the future and is due her next stage open heart between 3-5 years old and one day will eventually need a heart transplant. When her transplant is needed, we don't know and try not to think about. Taking each day as it comes and enjoying life to its fullest. She is our miracle and smiles through everything. The biggest inspiration we have ever known and teaches everyone around her to always have faith! Follow Chanel’s journey at www.facebook.com/ChanelMurrishHLHS

Terms Used

Hypoplastic Left Heart Syndrome: the left side of the heart, which should pump oxygenated blood to the body hasn’t developed. Echo/Echocardiogram: a picture of the heart and blood vessels using reflected high frequency sound waves. ECMO: Extra Corporeal Membrane Oxygenation: a heart lung machine – which may be used to rest the heart and lungs. Pacemaker: electrical control of the speed of the heart – either natural or artificial. Ballooning: stretching. Duct/Ductus arteriosus: a blood vessel part of the fetus’ circulation, carrying blood fromthe pulmonary artery to the aorta. Should close shortly after birth.

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Lola’s Journey By Amy Prangley

It was during my 20-week scan that I realised things weren’t quite as they should have been. The sonographer kept swapping rooms, and the scan was taking such a long time. We were told that she couldn’t locate all the valves and needed to transfer us for a more detailed scan.

Devastated

During this more detailed scan, we were told that our daughter-to-be had a congenital heart defect (Pulmonary Atresia with VSD was diagnosed). We were both devastated. I thought ‘why us’ and ‘what could my child possibly have done to deserve this’?

Regular scans

We had regular scans and both the University of Wales Hospital and growth scans at our local hospital. She grew well throughout pregnancy. Lola was then born at St Michael’s Hospital, in Bristol, by induction on 15th August 2014. She was taken straight to the NICU unit and put on Prostin immediately, which is the typical procedure for babies with this condition. She was then transferred to the Bristol Children's Hospital four days after birth.

Facebook and other media sites.

UPDATE: Lola had her heart

surgery in March 2015. It was the toughest time by far for both her dad and me. The operation ended up being ten hours long. Lola's heart arteries were cut and mended back together with muscle. The surgeon tried to close Lola's VSD, but her pressures were just too high. Lola then spent three and a half weeks in the hospital recovering from her operation. During her stay, she contracted a chest infection and fluid in her lungs. She was readmitted to hospital in July for a catheter to fit two stents into her arteries to widen them. Lola is doing really well. We celebrated her first birthday in August. She is due back in hospital early this year when she will have her stents widened

Terms Used:

Pulmonary Atresia: Pulmonary Atresia is a complete blockage between the right ventricle and the pulmonary artery. VSD: a hole in the wall separating the two lower chambers of the heart. NICU: Neonatal intensive care unit. Pulmonary Stenosis: narrowing of the pulmonary artery or valve.

Share Your Story

Lola’s diagnosis

Lola had another diagnostic scan to find out the extent of her condition. We were told that she had Pulmonary Stenosis with VSD. Our families have been extremely supportive of us through such a tough time. Lola has two sisters Carly and Charlotte, and they are excellent with her and help us out tremendously. I would advise any new parents who are told their unborn child has a heart defect that they are not alone there are so many other families going through this and so many support groups on

Do you have a story or experience that you’d like to share with our families? Or perhaps an idea for something you’d like to see featured in the next edition of Heartline Families Magazine? Please do get in contact and let us know we’d love to hear from you! Email trustee1@heartline.org.uk

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

A full explanation of the medical terms used in articles and features in this edition of the Heartline magazine can be found at: http://www.heartline.org.uk/allabout-heartline-families/our-world/

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). Send a cheque made payable to: HeartLine Families, or BACS receipt for payment to: Heartline Lloyds - sort code 30-96-96, a/c 59276960, with a clear delivery address to 3 Platanus Mews, 14a Church Street, Epsom Surrey KT17 4QB

The Heart of Stars

The Heart of Stars is where we dedicate a star to remember our children. Bereaved parents just have to let us know, and a star will shine for their child. Please contact intouch@heartline.org.uk for more information or visit the website.

www.heartline.org.uk Telephone: 033 00 22 44 66 Email: admin@heartline.org.uk Facebook: www.facebook.com/heartlineuk www.twitter.com/heartlineuk

Tell Your Story

Heartline Families is edited by Natalie Persoglio. Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk

Heartline magazines are also available on our website Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442

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Braveheart Leo’s Journey By Leo’s mummy, Mary Andrews My son, Leo's story, begins at our 12-week ultrasound scan when the sonographer, who had been unusually quiet for the past twenty minutes, called the consultant into the room. 'I'm getting a 5mm nuchal here?' 'Measure it again', she'd replied. 'That's very high'. The nuchal translucency reading, the measurement of fluid under the skin at the back of the baby's head, is supposed to be around 1.5mm at 11 to 14 weeks gestation. Ours measured 4.8mm despite repeated attempts to capture a lower reading. Much higher than normal. When the scan was over my husband and I were ushered past couples purchasing pictures and into a family room. The consultant sat opposite us and showed us the statistics chart she had in her hand. 'This is not good news. With an NT reading this great your baby has a 1 in 3 or 65 percent chance of a genetic condition or a cardiac abnormality. I'm really sorry it's not what you wanted to hear today.'

Confused and upset

It really wasn't. We left the hospital feeling confused and upset and without a scan picture to show off. Although there was still a fair chance, there was nothing the matter the ominous voice at the back of my head told me something wasn't adding up. Most people get little odds for anomalies when they go for the same test. Why was my probability so high?

The weeks were a blur

The weeks which followed were a blur of invasive genetic testing - I underwent a diagnostic test called CVS where a sample of cells is taken from the placenta to look for chromosomal problems - blood work and foetal heart scans at a specialist children's hospital in London. The waiting was terrible. We constantly skirted around the subject of a termination, hinting at it but never actually bringing it up. With my bump now obvious neither of us wanted to talk about what we'd do if the tests were positive. We discussed baby names instead, avoiding family and friends. There was nothing to say.

‘Enjoy the rest pf your pregnancy’

To our huge relief the various tests started

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to come back negative and in August 2014, at 23 weeks pregnant, our final heart scan confirmed there was nothing wrong with the baby's heart. 'Everything we see here is just ace,' the cardiologist had said at our last echo. 'Enjoy the rest of your pregnancy.' We were elated. We booked a summer holiday. We found out the baby's sex and chose a name for him. We planned a future together. I could show my bump off. 'Do you really think he's ok?' I asked my husband in a moment of doubt towards the end of my pregnancy. 'Yes. He's fine. He's perfect. How can he not be after all these tests?'

Beautiful Leo is born

Our beautiful little Leo was born on the 4th December, and we were discharged by the paediatrician a few days later. Looking back on those early, confusing, sleep deprived, months, punctuated by high-pitched baby cries, I often wonder when I realised something was wrong with him and not me! He was a poor feeder and breastfeeding was a struggle from the start, but that's not uncommon. He dropped a centile at sixteen weeks old and then dropped to the 2nd centile at twenty weeks, but again, it does happen, and the health visitor wasn't very concerned. He suffered terribly with colic and reflux. He wouldn't sleep. He was agitated. At five months old he developed a horrible, hacking, cough. 'He sounds like a smoker' my sister had joked. He did. I took him to the GP. 'Everything's fine'. I took him back again. I must have taken him to our local practice eight times in six months. They listened to his chest. 'It's clear. He has an upper respiratory infection.'

Leo began sweating

He would sweat during feeding. He would sweat in his car seat. He would sweat just lying in his cot. He'd never really thrown up before, but now he vomited profusely and after every feed. He stopped putting on weight altogether and by six months old, friends babies were almost twice his size. My husband and I began looking for private allergy specialists. 'Perhaps he has a milk intolerance?' His cough got worse and some nights he couldn't catch his breath. 'It's bronchiolitis exacerbated by allergies' the GP advised at our seventh appointment since Leo's birth. 'Not much can be done to treat a virus. But he's otherwise okay.' Incredulously, she wrote 'smiling, happy baby' on his medical records.

'He has a heart condition, right?'

One morning at the start of June I noticed that Leo's breathing was quick and shallow, his nostrils were flaring, and he was whimpering. I rushed him back to the practice and saw a different GP, who was sufficiently concerned this time. 'How long has he been breathing like this?' He asked. 'Two days. But he's been sick for months. I've brought him here so many times. I really don't know what else to do.' He sent us straight

to our local A&E. By then Leo was so poorly that we were escorted past the queue and were immediately surrounded by paediatric registrars. They took an X-ray and administered oxygen. 'He has a heart condition, right?' we were asked. 'No.' 'Are you sure?' It was exactly a year to the day since we'd had our NT scan and were told there was a probability our baby had a heart problem. I took my husband aside. 'I think she may be right. I think there is something wrong with his heart.'

Torturous few days

Those first few days were torture. I don't think I ate, changed my clothes or washed my face the whole time we were at our local hospital. I remember bursting into tears a lot, mainly on people's shoulders but also on my own in the family little room with the ancient kettle and colourful mugs, a room which was becoming all too familiar. I remember feeling angry. I remember thinking 'how could they have missed this so many times?' Most of all though I remember feeling relief as the CATS ambulance pulled up outside The Royal Brompton hospital in south-west London and a PICU nurse met us by the lifts. 'He's in very safe hands now.' She had smiled at us. I actually remember her smiling and thinking, that's a good sign. They must be positive they can help. I looked around at the wards. The state of the art equipment. The nursing staff. The doctors. 'Safe hands'. I believed her. I'd done all I could to get Leo to this point, and I could finally let go and let the experts take it from here.

Struggling

On the 5th June, Leo was diagnosed with a faulty mitral valve, a large ASD or common atrium, and a small left ventricle. The right side of his heart was severely dilated from having to push so much extra blood to the lungs for six months, and the left side wasn't big enough to be the body's systemic pump. He also had high pulmonary pressures and was out of breath all the time. By this point, to say he was struggling would be an understatement. We were admitted to the Brompton in June, and except for a two-week stay at home at the end of the month, we remained there until September after Leo's surgery.

Eight weeks on high dependency

It was a long, depressing, summer. Before the surgeon could operate on Leo's mitral valve, he had to put on around a kilo in weight and as he struggled to feed and digest food he was fitted with an NG feeding tube and started on erythromycin and anti-reflux medication to help him process milk more effectively. We spent almost eight weeks in a high dependency unit but by the end of August and with the help of dedicated nursing staff and doctors, Leo weighed almost 7kg, a decent weight for surgery.

The first day of Leo’s second life

The day of the operation my husband and I gave Leo a bath, carried him downstairs and handed him over to the anaesthetists. 'Please look after my baby', I'd said as we walked out. Everybody deals with surgery day in their own way, but I can honestly say I found it easier to cope with than all the waiting and worrying that had preceded it. This was going to be a new start. This was the first day of Leo's second life.

Five hours

Five hours later we received a call to say he was back from theatre. Five hours was a decent number, I reasoned. Not long enough for something to have gone

horrendously wrong, but enough time for them to have solved the problems. It had gone really well, we were told, the brilliant surgeon had managed to fix his mitral valve and close a large section of the hole, leaving a small fenestration to relieve blood pressure while the heart healed. We were overjoyed. 'All being well in the next few weeks, his life expectancy should be normal' the surgeon had said at the end of the briefing. What more can a parent hope for?

Leo improves

We were discharged from hospital three weeks post op, and it was immediately obvious Leo was in a much better place. He had much more energy, the vomiting had stopped, and he could feed without getting out of breath. We've been home for over a month now, and he continues to improve and gain weight. He's way behind his peers at the moment, and it could be up to a year before his heart grows into the correct shape, and his breathing settles down into a steady rate, but we're delighted with how well he's doing considering, ‘How do you cope?’ People often ask me how as a parent, I coped with it all. 'If it was me I would have gone mad!' is a familiar refrain. 'I couldn't have done it'. It's not true. You have no choice but to get through it, and you do. People have different strategies and different ways of dealing with awful circumstances, but the Brompton was my crutch. The staff were magnificent and just knew Leo was being looked after by some of the most knowledgeable and caring medical professionals in the world mitigated some of the fear and the sense of injustice I'd been feeling. We were lucky to be here.

Looking back at the original scans

Leo's heart condition is congenital, which means it was present at birth. I've since gone back to the children's hospital who performed my foetal heart scans and was given the all clear, and I've asked them to re-examine the first echos, looking for early signs of disease. They have. Leo's heart problems are not visible on either of the scans that were carried out during my pregnancy. Nothing was missed. The heart did look healthy. It could be that 23 weeks into the pregnancy the issues were not yet manifest, or perhaps something went wrong in the third trimester or during delivery to cause damage to the valve. It's not very likely, but I'm not sure it really matters anymore. I think, to be honest, I made my peace with Leo's story at our 12-week scan when we were told there might be something wrong. You just have to accept what life throws at you sometimes and look into the future for better days.

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Let's Get Physical! with PGL Activity Weekend for heart children

PGL Activity Breaks 2016 We are planning on running two PGL Activity Projects in August 2016 at Boreatton Park, Shrewsbury for 12 heart children aged 9 to 17, from 29 July to 1 August 2016, and for 12 brothers and sisters of heart children aged 9 to 17, from Friday 5 August to Monday 8 August 2016. We ask you to deliver your child, with suitable clothing and a sleeping bag, to the site by 3.30 pm on Friday, and collect, after lunch at 2.00 pm on Monday. The cost of the three night break is covered by Heartline, including activities, accommodation, food and insurance. The breaks are organised through PGL, the market leader for activity holidays. Their policy is to help children take their first steps towards independence and give them an opportunity to build self-confidence whilst making new friends. We believe this an incredibly valuable opportunity for heart children and after working with this site for several years and are confident in their ability to cater to the very specific needs of heart children. We have considered other venues both within the PGL group and searched for other suppliers and consider this to be the most appropriate venue. Each break will be accompanied by two to three experienced Heartline parents, acting as Leaders on behalf of Heartline. Children and young people choose activities within their limitations from a wide range including abseiling, archery, arts and crafts, ball sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkelling and swimming. There is a qualified PGL leader for all activities, and your child’s safety is of paramount importance. PGL are experienced in the needs of Heartline participants as we have been working with them for some years.

Building confidence, making lifelong friends and having the time of their lives - a typical weeked for one of our heart children on a PGL activity weeknd! We are running two PGL Activity projects in August 2016 at Boreatton Park, Shrewsbury, for 12 heart children aged 9 to 17, from 29 July to 1 August for 12 brothers and sisters of heart children—again aged 9 to 17, from Friday 5 August to Monday 8 August. We ask you to deliver your child, with suitable clothing and a sleeping bag, to the site by 3.30 pm on the Friday, and then collect after lunch at 2.00 pm on the Monday. The cost of the three-night break is covered by Heartline, including activities, accommodation, food and insurance. The breaks are organised through PGL, the market leader for activity holidays. Their policy is to help children to take their first steps towards independence and give them the opportunity to build self-confidence and make new friends. We believe this to be an incredibly valuable opportunity for heart children. Each break the children will be accompanied by experienced Heartline parents. We have worked with PGL at Boreatton Park for several years. We reviewed our experience with them and conclude that they are aware of Heartline children needs and are experienced providers. Children and young people choose activities within their limitations from a wide range including abseiling, archery, arts and crafts, balls sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkelling and swimming. There is a qualified leader for all activities, and your child’s safety is always of paramount importance.

Name of parent: Address: Telephone landline:

Mobile:

Email:

Heart children break Friday 29 July to Monday 1 August Name of child 1 Date of birth Name of child 2 Date of birth Brothers and sisters break Friday 5 August— Monday 8 August

To qualify and apply for a place for your child you must be registered with Heartline Families. You can join Heartline Families by clicking on the ‘Join Us’ icon and selecting the ‘Application Form and Update’ in the drop down menu.

Name of child 1 Date of birth

If you are registered with Heartline Families you can apply for the Activity Weekend Form by emailing intouch@heartline.org.uk

Name of child 2 Date of birth

The 2016 Activity Weekends are kindly supported by The ACT Foundation.

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Due to the limited number of places we cannot guarantee your child a place. To request a place, please complete the form below AND either pay £50 into Heartline’s account (sort code 30-96-96, account number 59276960, using your name and PGL as the reference) or by sending a cheque for £50.00 with this form to 3 Platanus Mews, 14a Church Street, Epsom Surrey KT17 4QB. This is a refundable deposit and if your child cannot be accepted, or after your child has attended, this will be returned to you.

Either I enclose a cheque for £ (£50 for each child) as a refundable deposit [ ] Or I have paid £ (£50 for each child) into Heartline’s account with ref my name and PGL [ ]

Signed:

Dated:

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Autumn Review 2014

A look back at Heartline Families!

Help us to help them

Inside: Real Life Experiences PGL Holiday Fun Caravan Adventures Review: How did we do And Much More

nt Patie BMA n Awards atio ard Inform f-Care Aw Sel 15 20 er Up Runn

Dental Care

For Children With Heart Conditions

Heartline Families supports families with children with heart disorders, whatever the condition, wherever it is treated. The support we offer covers all aspects of being a heart parent or heart child. We reply solely on funds from our members and supporters. We are grateful for any support you can give us. Log on to www.heartline.org.uk and click the Donate Now Button or send a cheque. Direct Debit - Could you spare a little each month? Make a regular donation direct to Heartline every month, and if you pay income tax, Gift Aid it so that Heartline receives an extra 25% on your gift. Payment to Heartline Families, Lloyds Bank Sort Code 30-96-96 Account number: 59276960

I would like to help Heartline and will make a Direct Debit of £……….......... Please find enclosed a donation of £…………........… I want Heartline to reclaim tax on the above donation and understand that I must pay an amount of income tax or capital gains at least equal to the tax HeartLine reclaims on any donation in the relevant year. Signed: ............................................................ Date: .............................. Return this form to: Heartline Families, 3 Platanus Mews, 14a Church Street, Epsom Surrey KT17 4QB. Alternatively, email these details over to admin@heartline.org.uk and start helping another family like yours.

Fundraising?

You could also help by jumping out of a plane, holding a coffee morning, a sponsored silence, or getting your school or workplace to choose us as their charity. We have a wealth of ideas and lots of ways to help support you in your fundraising! From hooded bears and balloons to collection buckets and stickers - don’t delay, contact us today! Admin@heartline.org.uk

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Profile for Heartline Families

Heartline Families winter 2016 review  

Heartline Families winter 2016 review  

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