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Meera Arends

London Marathon 2018-Hope's Story-Trisomy18

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My story

[p]A few days after our daughter, Hope, was born in November 2016 we were given the devastating news that she had Trisomy 18 or its common name, Edwards’ Syndrome. Like most people, this was something we had never heard of. It is a rare genetic disorder and babies with it are classed as ‘incompatible with life’ as there is no cure. Hope was here for nearly 11 months![/p][p]This year our friend Robin has offered to run The London Marathon in memory of Hope to raise awareness of Trisomy 18. Not only is it 2018, it is also the 18th time Robin has done this fantastic event, an irony that is not lost on us![/p][p]In Hope’s memory, we would like you to help raise funds for two charities that are close to our hearts:[/p][p]Shooting Star Chase Children’s Hospice in London who helped us enjoy our time with Hope so much. An amazing place with amazing staff.[/p][p][url=http://www.shootingstarchase.org.uk/]www.shootingstarchase.org.uk[/url].[/p][p]Heartlands Baby Sanctuary in Cape Town who provide a similar service. Hope was half South African we thought it fitting to contribute to them. As Heartlands is situated in a developing country and as government funding is scarce they rely heavily on private donations and sponsors for the much crucial and much needed work they do. We will be visiting them in March.[/p][p]As Heartlands Baby Sanctuary is an overseas charity all cash donations will be sent to them once fundraising ends.[/p][p][url=http://www.heartlandsbaby.org/]www.heartlandsbaby.org[/url].[/p][p]Thank you in advance for any amount you wish to donate for these two amazing causes. No amount is too little or too large. If possible please try a bit of fundraising at your work, have a bake sale, offer to do something out of your comfort zone to raise some money! Every penny counts![/p][p]You can find out more about Trisomy 18/Edwards’ Syndrome by following the links below. Please share these and Hope’s story wherever you can to help raise awareness and help any parents that may find themselves in the position we did.[/p][p][url=http://www.soft.org.uk/]www.soft.org.uk[/url] [/p][p][url=http://www.nhs.uk/conditions/edwards-syndrome/]www.nhs.uk/conditions/edwards-syndrome/[/url][/p][p]Below is Hope’s story and some information about Trisomy 18. Please have a read and feel free to share.[/p][p]Hope's Story...[/p][p]Our daughter, Hope, was born on 27 November 2016. When she about 8 hours old she was taken to the neonatal intensive care unit. She was not latching on to feed and the midwives noticed little red dots on her body called Petechial Spots. They took blood from her and inserted several tubes and wires to monitor her continuously. She needed a platelet transfusion as her white blood count was very low. Low platelets meant that she could bleed to death. [/p][p]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 she had jaundice, her heart, kidneys, liver and lungs were not functioning properly and she stopped breathing and then proceeded to have seizures. She also had a small amount of blood that had accumulated in her brain.[/p][p]Our baby was placed on a ventilator and was catheterised. She was in an incubator under UV lights to treat her jaundice. She had a cannula inserted and was given IV antibiotics and other medications to stop the seizures. We felt totally helpless and could only pray and hope for the best.[/p][p]We decided to call her Hope. Hope Tanusha Arends. Tanusha means 'blessing’ and was suggested by her maternal grandmother. All we wanted to do was to take her home. Sadly, we realised that this was not going to happen anytime soon and the intensive care unit became our second home.[/p][p]After 5 days Hope started to show signs of slight improvement and started stabilising. Her platelets started to increase (not by much but any increase was a good sign), kidneys started to function normally and she started breathing without the ventilators. Her seizures stopped and she came off the antibiotics and antivirals. We were so excited to be able hold our daughter again since this crazy chapter had started. She was so tiny, but so perfect.[/p][p]On day 10 we met with the geneticist as the results from her blood tests were back. We were told Hope had a rare genetic disorder called Trisomy 18/Edwards’ Syndrome. Then came the devastating explanation...[/p][p]Each cell in your body normally contains 23 pairs of chromosomes, which carry the genes you inherit from your parents. But a baby with Edwards' syndrome has three copies of chromosome number 18, instead of two. The presence of this extra chromosome in cells severely disrupts normal development. [/p][p]Edwards' syndrome is rarely inherited and is not caused by anything the parents have done. The development of three copies of chromosome 18 usually happens at random during the formation of either the egg or sperm.[/p][p]There are 3 types of Trisomy 18:[/p][p]Mosaic (only some of the cells have the extra copy of chromosome 18)[/p][p]Partial (only a section of the additional chromosome 18 is present in the cells, rather than a whole additional chromosome 18) [/p][p]Full (every cell is affected)[/p][p]Babies with mosaic or partial versions usually have a longer life span as only certain cells are affected. [/p][p]Hope had the full version which meant every cell in her body was affected.[/p][p]The statistics for babies with full Trisomy 18 are quite startling:[/p][p]Only 1 in 3,000 babies make it to a live birth[/p][p]Out of that only 1 in 6,000 babies make it to one week[/p][p]Of those only 1 in 60,000 make the first month[/p][p]And sadly, only 1 in 600,000 make it anywhere close to their first birthdays [/p][p]It is the second most common genetic syndrome after Downs, but not a lot of people have heard of this as most of the babies die within the first trimester. Trisomy 18 is a life limiting condition and there is no cure. We were told not to expect Hope to live past 21 days and we needed to prepare for the worst.[/p][p]So many different emotions and questions swamped our minds: ‘is it me?’, ‘what did I do wrong?’, ‘why us?’ and the hardest thing was trying to convince ourselves that this was no one’s fault and that it is a totally random phenomenon. [/p][p]Funeral arrangements were discussed and we decided to cremate Hope here in London and take her ashes to South Africa where she will be laid to rest next to her paternal grandfather. The decisions no parent ever wants to think about let alone plan...[/p][p]But God and Hope had other plans...slowly, but surely, Hope’s condition improved and she was moved from intensive care. She was only on oxygen and her usual nasogastric feeding tube (NG tube) which was so amazing and even though she still had major problems with her liver and the holes in her heart, the fact that she was out of the incubator and lying in a little cot was so comforting. Even her screaming and crying sounded like a perfect melody! Her platelets were still fluctuating and despite her persisting jaundice, we were feeling happy and relieved because she was getting better. [/p][p]In December 2016, we celebrated Hope’s first Christmas together as a family, albeit in hospital. The hospital was very accommodating and generous to offer us a room to celebrate with family. It was a very special day![/p][p]The staff in the special care unit were amazing! The doctors, ward matron and the nursing staff were there for us throughout. We were taught how to feed Hope through the NG tube and to administer her daily medications, how to pass a NG tube (in case it came out as it did so often because Hopey would pull it out!) and how to use the SATS monitor (it calculates her oxygen in her blood as well as her heart rate). Things we never thought we’d ever have to learn! The staff had become like family and we put all our trust into them knowing they were looking after Hope with so much love and care. As much as they looked after her they also looked after us. [/p][p]It was when Hope was about 3 weeks old that we first heard about Shooting Star Chase Children’s Hospice. We remember sitting around a table with the doctors, matron, community team and the representative from the hospice. It felt so surreal that they were talking about sending her home. Something that would be so normal for most people after they’d had a baby felt so scary to us. Would we be able to do it? What if something happens? Who do we call if something happens? It was so overwhelming! [/p][p]We were given the option of going to the hospice for a week if we wanted. There Hope would receive 24 hour care in a fully equipped facility. As much as we wanted to go home, we decided to go to the hospice as a transitional period between hospital and home.[/p][p]On 29 December 2016, after 5 whirlwind weeks Hope finally left the hospital! I think this was probably one of the best moments for us. Matron ensured that we could drive to the hospice ourselves and not in an ambulance so we got to experience the joy and excitement of carrying our baby out of the hospital, like everyone else. It felt amazing![/p][p]When we got to the hospice we were welcomed by Charlotte who helped us settle in. She had Hope’s room ready, made sure we had something to eat and just made us feel at home. [/p][p]Although we’d been apprehensive about going to the hospice it was the best decision we made. It allowed us to spend time as a family without worrying about cooking or cleaning or other household chores. Our meals were provided, clothes washed and Hope was spoilt rotten! She was the youngest child there so everyone wanted to care for her. She had so many cuddles from everyone![/p][p]We even saw in the New Year together as a family and with the nurses on duty. We were all feeling very sleepy but Hope was wide awake and made sure we all watched Big Ben chime midnight and the fireworks on TV! We knew that this coming year was going to be hard but for that moment we were blissfully happy together. [/p][p]One of the nurses suggested taking Hope into the Hydrotherapy pool. Finding swimming nappies for a tiny baby like Hope was difficult but the nurses somehow managed it. And so on 3 January 2017 Hope went for her first swim! Turns out her swimming nappy was still a little bit big and Hope pooped in the pool! We couldn’t stop laughing! It took them 48 hours to drain, clean and refill the pool...Hope had certainly made sure she wouldn’t be forgotten! [/p][p]On 5 January 2017 we finally went home! We went from total despair and helplessness to learning how to deal with our 'normal'. It was so nice to finally be home with our baby. [/p][p]We had our ups and downs, regular trips to the hospital for appointments and even a few scares along the way but Hope was determined to prove the doctors wrong and pulled through it all.[/p][p]Hope's social calendar suddenly filled up very fast as summer approached. She had play dates, went to BBQ's, went to the pub, out for dinner and even went for a day trip to the seaside! We celebrated some special milestones too such as both our birthdays, mother’s and father’s days and our personal favourite when Hope tried food for the first time! The best summer ever![/p][p]In September 2017, we left home for King's College Hospital. Hope was due to have a scan on her liver as they had spotted a tiny lesion on a previous scan. On the way there she became very unwell. Her oxygen saturation kept dropping and her heart rate was over 200 bpm. She was admitted to the children’s ward and put onto Optiflow (this helps her to breathe).[/p][p]Two days later things got worse. Hope was taken to the High Dependency Unit and put on Bi-Pap (this delivers pressurised air through a mask to the patient's airway to keep them open). [/p][p]After a week or so, Hope started to improve and there was even talk of discharge. I sat by her bed planning her first birthday party and looking into how we could take her to South Africa to meet her family there. I was so sure she’d be coming home. [/p][p]Unfortunately she then contracted a chest infection and on Monday 23 October 2017, Hope's little heart got very tired and just stopped beating...[/p][p]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.[/p][p]About Shooting Star Chase Children’s Hospice...[/p][p]Shooting Star Chase is a leading children’s hospice charity caring for babies, children and young people with life-limiting conditions, and their families. They support families from diagnosis to end of life and throughout bereavement with a range of nursing, practical, emotional and medical care.[/p][p]Their care service includes short breaks at their two hospices (Shooting Star House in Hampton and Christopher’s in Guildford), Hospice at Home, day care, symptom management, end-of-life care, bereavement care and a comprehensive range of therapies and support groups for the whole family.[/p][p]It costs £10 million a year just to maintain their current level of care. Around 10% of that income comes from government funding, so they rely on their supporters’ generosity to keep the service running.[/p][p]Hope had another two stays at Shooting Star House and each time the staff at the hospice were amazing. We were left speechless at the level of care and attention they gave each one of their patients and their parents. [/p][p]Hope and I went to stay there for a week in May 2017. We would have lunch together with the other patients and as the weather was so nice we all had play time in the sun. We both even had massages! The staff made sure everyone was included in all the activities. It really is like a big, happy family there.[/p][p]At the beginning of September 2017 Hope went to stay at the hospice with her grandparents. They had a lovely weekend together swimming, going for walks and taking Hope on the swings for the first time. A precious time for them all.[/p][p]About Heartlands Baby Sanctuary...[/p][p]Heartlands Baby Sanctuary was established in 2015 and offers residential care and support for at-risk children from birth to 6 years of age as well as their families.[/p][p]Heartlands is located in Somerset West, a town just outside of Cape Town. It provides short term residential care for abandoned, abused, neglected children and children diagnosed with life limiting and life threatening illnesses such as Malnutrition, HIV/AIDS, Cancer, Tuberculosis and other illnesses. Despite this they all have one thing in common . . . it is every child’s birth-right to belong.[/p][p]We will be visiting Heartlands in March and look forward to sharing our experience with you.[/p][p] ————————————[/p][p]After my parents stayed at Shooting Star Chase they told me how touched they were by their experience there and expressed their sadness that unless someone had a child or grandchild going through something like Hope was, most people would never hear about just places like Shooting Star House and the services they provide. This is why it is so important to raise awareness for such organisations as Shooting Star Chase and Heartlands Baby Sanctuary.[/p][p]Robin says he has the easiest bit to do as all he has to do is run! So I think we should all support him on his 'wee run around London' (as he calls it!).[/p][p]Please share, forward, copy and paste the Virgin Money Giving link to as many people as you know. Facebook, Twitter, Instagram, Snapchat - use them all to share Hope's story and to raise awareness for Trisomy 18 and to raise money to help the people helping families in this unthinkable situation. From the bottom of our hearts we thank you for your contribution [/p][p][br][/p][p][br][/p]
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Share Meera's story

Event

2018 Virgin Money London Marathon

2018 Virgin Money London Marathon

22 Apr 2018

Charity

Shooting Star Chase

Shooting Star Chase

Supporters

12-May-2018

Anonymous

In memory of hope, thinking of you all x Bijal Mulji and family

£51.00

03-May-2018

Anuj Anand

Donation from Robin's excellent Marathon effort in the hot sun

£100.00 plus £25.00 Gift Aid

03-May-2018

Funmi Akanmu HCA

£15.00 plus £3.75 Gift Aid

02-May-2018

Jaki evers

Sorry it’s taken so long to donate Robin! Well done and such a worth cause.

£20.00 plus £5.00 Gift Aid

01-May-2018

Mahesh Govindia and Family

£50.00

30-Apr-2018

AMy Neeb

£100.00 plus £25.00 Gift Aid

29-Apr-2018

The Dhirs

Robin..so glad this 18th one was for T18 in memory of Hope. Xx

£100.00 plus £25.00 Gift Aid

29-Apr-2018

Anonymous

Better late than never, this I our little contribution. Sending you lots of love Cecile and Ben

£50.00

29-Apr-2018

Khushi and Naynay

For our little darling sister Hopey.

£151.80 plus £0.00 Gift Aid

28-Apr-2018

Ying

xxx

£30.00 plus £7.50 Gift Aid