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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.

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 was placed on a ventilator and was catheterised. She then proceeded to have seizures. She also had a small amount of blood that had accumulated in her brain. We felt totally helpless and could only pray and hope for the best.

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.

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.

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...

Hope had the full version which meant every cell in her body was affected. This meant that her life expectancy was very low. The term ‘incompatible with life’ kept coming up and each time it filled us with dread. We were literally taking it hour by hour, not knowing if that would be our last with her. We were told not to expect Hope to live past 21 days and we needed to prepare for the worst.

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.

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...

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 such 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!
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!
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. 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.   

On 5th 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.

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.

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!

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).

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.
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.
My friends Angie and Sim and I have launched Hope's Lashes...... we hope to raise awareness of T18, tell Hope's story and raise vital funds for SOFT UK as we go.  If you'd like to follow our story, find us on Facebook and on Instagram @hopes.lashes

Created: 28/01/2019 18:30

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