Over the coming weeks, in celebration of our 21st birthday, we’ll be telling you the stories of 21 children whose lives have been transformed, improved and often saved by the Noah’s Ark Children’s Hospital. Because children like these are the reason why we’ve all cared together for the last 21 years.
1. Clark’s story
For Clark’s parents, the reason why is very simple. Without the Noah’s Ark Children’s Hospital for Wales, their son would not be here. When he was rushed to the paediatric intensive care unit with meningitis and septicaemia, Sarra and Ben were told that their baby was so ill, he simply wouldn’t have made it to the next nearest children’s hospital.
Every organ in Clark’s body other than his heart was being bypassed by a machine and it took four nurses working constantly just to administer the drugs and medication that was keeping him alive.
Finally after weeks on intensive care and an amputation that saved his life, Clark began to improve. He was moved to Owl and Jungle Ward where he spent many weeks re-learning all the things he’d been able to do before falling ill, like rolling and sitting. After weeks of being tube fed, he even had to learn to eat again and the play specialists and physiotherapy team worked with him intensively to try and make the process less traumatic. Clark was finally discharged to continue his rehabilitation at home having spent three months in hospital.
Today, the little boy who was once so ill that doctors weren’t confidently able to give a prognosis beyond the next few minutes, is living life full throttle, just like any six-year-old should. He loves school and taking part in PE lessons with his activity limb and, now that restrictions are lifting, he’s about to start swimming lesson.
You can read Clark’s full story here
2. Rea’s story
Rea was born with TOF/OA and 2 holes in her heart…. all undetected in pregnancy so her diagnosis at 12 hours old came as quite a shock! Born six weeks early, her parents had been prepared by the NICU team that she’d be taken to intensive care as soon as she arrived.
Mum, Lisa says: “To this day my heart still aches at the memory of not being able to hold her and give her her very first cuddles.”
By the following morning Rea was in theatre having surgery to repair her oesophagus, windpipe and stomach. Surgeons repaired her oesophagus and windpipe but were unable to connect her stomach at that point. Her parents were told that they’d simply have to wait for her to grow until they attempted the surgery again.
And that’s what they did! Rea spent 7 long months in the NICU. They faced some very scary times. She was quite poorly in those early days and needed to be ventilated to help her breathe. She had numerous blood transfusions and what her mum describes as a crazy amounts of IV medication.
But Rea did grow bigger and stronger and finally her mum and dad were given the amazing news that she was ready for surgery. Lisa says: “The red helicopter was booked and on 5th March 2017 we said farewell to the wonderful NICU team and Rea was flown to Great Ormond Street Hospital. Five days later she was in theatre. That day was quite possibly the longest one of our lives – after 8 hours in surgery Rea arrived in intensive care where she’d spend the next week sedated for the best chance of recovery. After a 2 month stay in GOSH she was discharged and finally spent her first night at home in her own cot. Complete and utter bliss!”
Fast forward to today.and Rea is almost 5. Her mum describes her as the happiest little girl with a great zest for life! Lisa says: She has an amazing attitude and takes so much in her stride. Hospitals visits, her appointments, medication and so much more. Her feeding journey has been a rollercoaster. She was 8 months old when she was first orally fed so there was a high chance that she’d have issues with food. After 2 years of being tube fed, followed by a year on a puréed diet she has developed a real love of food and has a great appetite! It is important that Rea understands the foods that she can and can’t tolerate. So from a young age we have always tried to educate her about her condition. But in true Rea style… she just gets on with it!
“The early days seem like a lifetime ago but yet never leave your thoughts. As a family we will always be grateful to the staff at the NICU for helping and supporting us to give Rea the best start we possibly could. These days Rea is still a regular visitor at Noah’s Ark but just for check ups!”
3. George’s story
George was born 38 weeks in to his mum, Laura’s pregnancy after she went to hospital for a check because she hadn’t felt her baby move in a while. The blood flow from Laura’s placenta to George had failed and both mum and baby were in immediate danger. George was born by caesarean with hypoxic-ischaemic encephalopathy (HIE), a birth brain injury due to lack of oxygen. Critically ill, he was taken to intensive care where the doctors described him as being in dire straits.
On NICU, George was ‘frozen’ for three days – a medical process called therapeutic hypothermia which aims to limit or reverses brain injury. Both he and his mum developed sepsis and George’s body triggered an autoimmune response. An infection marker over 80 is considered critical. At one point George’s was 482! He suffered aggressive meningitis type skin rashes with deranged blood results.
After more than 100 blood tests, a skin biopsy, a bone marrow biopsy, three lumbar punctures, use of a drug never used on NICU before and 12 blood and platelet transfusions, George slowly stabilised. At three months old he finally got to go home under the care of the outreach nursing team. Laura, remembers the consultant neonatologists saying that they would scratch their head into retirement as to why George had been so ill and to this day, there’s no real explanation why.
Because George had incurred a brain injury and was so critically ill, his mum and dad were prepared for the possibility that George may not walk, talk or hit any of his milestones. But George had other ideas! Laura and Rich believe that it’s all down to the excellent care he received on NICU, the outreach nursing team who supported Laura and Rich after George went home and the Noah’s Ark Children’s Hospital where he remains an outpatient to this day.
This four-year-old is a force to be reckoned with. He took his first steps at 17 months, loves to sing, plays football for his local team, has an incredible photographic memory, is a big foodie and has extremely advanced literacy skills. He’s enjoyed many holidays and has recently become a big brother. Thanks to the care he received, he is living a childhood his parents never dreamt would be possible.
4. Fizz’s story
On the day she became ill, Felicity, now known to everyone as Fizz, had enjoyed a lovely afternoon decorating the Christmas tree with her brother Dylan and mum, Fran. Fizz went to bed as usual but a few hours later, Fran heard a thud and walked in to find her daughter on the floor, completely unable to move and screaming in fear for her mum.
Fizz was diagnosed with a rare condition called Guillain-Barré syndrome. Quite literally overnight, Fizz went from a fiercely independent and spirited little girl to one that couldn’t move, eat, or even breathe on her own. She was rushed to the Noah’s Ark paediatric intensive care unit and her parents were told to prepare themselves for the worse.
But Fizz’s will would not be crushed. After receiving a plasma exchange things started to look up and gradually parts her body started to wake up, starting with her eyes, then her face and toes. The play team helped her play and paint using her feet and she gradually started to regain the smile she had lost due to the shock of her new situation.
After months of intense rehabilitation, Fizz was finally well enough to go home in the July, 258 days after she was first admitted. At that point, Fizz still needed at least three litres of oxygen to keep her sats at a safe level. On the day of her fifth birthday, she had open heart surgery to try and address the problem and since then she hasn’t needed any oxygen and has gone from strength to strength.
Fizz is now eight and is a full time pupil at Jubilee Park Primary. Though she suffers from selective mutism, she’s slowly starting to find her voice in class. Fizz is increasingly spending more time off her ventilator, is feeding orally more and more, has learnt to pull herself up to sit and can stand up with no support. Fizz quickly became adept at writing, painting and playing the ps4 with her feet but has recently started writing with her ‘sleepy hand. She’s also determined to walk again and anyone who knows Fizz has no doubt that she’ll get there.
Despite having been home for many years now, Fizz still talks about her “buddies” at the Noah’s Ark Children’s Hospital and has returned several times to deliver gifts for the children bought with her own pocket money.
You can read Fizz’s story in full here
5. Cai’s story
“Cai had his first stay in the children’s hospital, when he was just 5 weeks old. Unknown to us, Cai suffered with a complex degenerative disease called Vici syndrome. Cai was a very complex little boy and over the years met every specialist in the hospital! The staff at the hospital were incredible and they become part of our family. They were far more than doctors, nurses, support staff and play therapists.
“So many people went above and beyond for Cai and our family. They would often be giving me a hug and listen to my worries. Cai spent lots of birthdays in hospital and the staff would always go the extra mile to make sure he had a great day. Nothing was ever too much.
“No-one quite understands how incredible the team is in Noah’s Ark until you see it for yourself and there is no place I felt safer with Cai when he was poorly than there. Cai spent over 11 years using the hospital facilities, being a very frequent patient! Everyone knew who he was and he loved to cause chaos, especially during handover or break time. He visited all of the wards several times, including requiring specialist care on PCCU on 8 separate occasions. He also had several operations.
“We were guided and supported by the incredible team and this enabled us to develop the skills to look after Cai at home, when we could.
“Cai had a big personality and I know he touched everyone’s hearts at Noah’s Ark. He had the most incredible smile, dress sense, hair and humour. The doctors worked so hard to give Cai the best opportunity of life and he had the best quality of life he could have possibly had. We cannot thank everyone enough who was involved in Cai’s care and couldn’t have wished for a better team to care for Cai. Thank you for never giving up on Cai and we know you will all miss him as much as us.” Michaela – Cai’s mum.
6. Mia’s story
In April 2017 at the age of ten, Mia was diagnosed with a rare bone cancer called osteosarcoma. She endured months of gruelling chemotherapy at the Noah’s Ark Children’s Hospital for Wales and underwent an above the knee amputation to help save her life.
Since going home, Mia has gone back to school and the back to the sports she loves. She won a young sportsperson award, became an ambassador for the charity and, as well as raising funds for the charity herself, has inspired many others to do the same.
Mia says: “Living with a disability has not held me back. Working towards your dreams is still a possibility but you might just have to take a different path to get there!”
Read Mia’s inspiring story in her own words here
7. Edie’s story
Edie was born at 23 weeks plus 4 days gestation, weighing 580 grams. She was born without the full course of steroids to mature her lungs or magnesium for her brain. She was born with sepsis, was severely bruised with a barely beating heart, making no attempt to breathe.
Being born before viability meant that Edie’s chances of survival were extremely low. On NICU Edie suffered serious issues with almost every organ in her body: a brain bleed, a problematic hole in the heart and severely underdeveloped lungs that collapsed. She was was diagnosed with chronic lung disease.
Edie contracted pneumonia, sepsis four times and a number of other infections. She battled low platelets, low haemoglobin and severe jaundice. She received a number of blood transfusions, massive amounts of different medications and she struggled through the withdrawals.
Edie endured many painful procedures and stressful tests and at two weeks old she was so sick that doctors considered the discontinuation of her care. She received various forms of breathing help for 16 weeks. At 12 weeks old and still only 3lb, Edie underwent an operation for retinopathy of prematurity (a potentially blinding condition) and she stopped breathing on the operating table.
It’s been said that Edie is a force of nature and after 109 days at NICU, a week before her due date, she made it home, without needing breathing or feeding support. Her survival is remarkable but perhaps what is more remarkable is how she has turned out to be; with no ongoing health issues, both physically or neurologically.
Mum, Nicola says: “We’re so immensely proud of Edie. She’s kind hearted, charismatic and incredibly popular little girl who’d never lose a battle of wills. She’s smashed through every milestone put in front of her. She started school in September, is very bright and loves to learn, and she became a loving big sister a year ago.
“The incredible staff at NICU saved Edie’s life and the wonderful staff at Noah’s Ark saved her sight and provided great outpatient care; keeping her inoculated and checking on her development, heart, eyes and bones. She’s now Edie’s discharged in all areas. Thank you for giving our girl the best care.”
8. Harvey’s story
As much as we all want to, it isn’t always possible to make everyone better. But together, we can help make little differences to the lives of children and families during the hardest of times.
We met eleven-year-old Harvey near the end of his seven month stay at the Noah’s Ark Children’s Hospital for Wales.
Harvey suffered from a range of complex long term conditions and had been a patient on Jungle Ward since being admitted with intestinal problems last autumn.
After months of tests, his parents were given the devastating news that the new condition Harvey had developed was not treatable. Shortly after, Harvey started receiving palliative care and plans were made to take him home.
Together with his amazing parents and the staff on Jungle ward, we made it our mission to keep Harvey smiling. And, with the help of a few VIPs, our four legged friend and thousands of people from across the world who answered our call for help, we did.
Watch Harvey’s story here.
