When Zeniah's family walked into Charlton Farm earlier this year they were at ‘breaking point.’
Looking after their disabled daughter Zeniah, who was born with 4 large holes in her heart, had left them feeling ‘in bits’ and ‘struggling to cope.
Zeniah was born in 2019. But quickly after her arrival mum Dana and dad Marc suspected something was wrong.
“Zeniah was born under emergency section,” said Dana, “and she didn’t breathe for the first few minutes.”
Zeniah spent the first 2 weeks of her life in Southmead Hospital’s Neo Natal Intensive Care Unit (NICU) where medics diagnosed her with a heart murmur which they said would get better.
“When we brought her home we suspected something wasn’t right. She was sleeping up to 20 hours a day and struggling to wake up to feed and had a rapid heart rate.”
An appointment with her midwife then saw Zeniah ambulanced into hospital where further tests revealed she had 4 large holes in her heart.
At just 4 weeks old and weighing just 5lb, tiny Zeniah underwent surgery to band, untangle and reimplant her pulmonary artery, which had wrapped itself around her trachea. Dana said:
Her heart was so tiny, the size of a strawberry and the operation took 8 hours. They told us then she had a 50/50 chance of survival.
Zeniah recovered well from her surgery and after 8 weeks in hospital was allowed to return home with Dana, Marc and big sister Kirianna.
But after a couple of weeks she took a turn for the worse where it was discovered she had fluid in her heart which needed further surgery to be drained.
Returning back home, Zeniah was then diagnosed with dysmorphic facial features.
“I knew there was something else apart from her heart issues, and what was wrong with her was not just attributable to what they had found in the hospital.”
Genetic testing was then carried out, the results of which were delayed as a result of the covid outbreak. During the pandemic the family shielded at home where miraculously, 2 of Zeniah’s holes in the heart healed on their own.
Then in July 2021 Zeniah had a seizure in her pram, leaving dad Marc to give her lifesaving CPR until ambulance crews arrived.
Initially medics thought the seizure may be a one off, but 6 weeks later, she suffered another and was diagnosed with epilepsy.
In February 2022, the results of the genetics testing came in – revealing Zeniah, then 3, had Mowat-Wilson Syndrome. The syndrome is so rare it was only first diagnosed in the late 1980s and only 600 people worldwide are sufferers.
“Aside from her seizures, Zeniah is a very happy disposition,” said Dana
She is very social and seeks out interaction with people all the time. She is just a joy and seems to have an innate ability to know who is in need of love – and is always happy to give it. She loves going to the supermarket and sitting in the trolley. She is always blowing kisses at people and reaching out for a hug.
“There have been many occasions where she has given someone a hug and they have responded by saying how needed it was at that moment in their life. I feel like everyone in the world has a purpose and Zeniah’s is being a joy and making people feel fuller from having met her.”
The family, who live in Bristol, continued to look after Zeniah at home, but without a social worker and little medical assistance, they started to struggle.
A lifetime nurse was eventually appointed to the family in December last year who made a referral to Children’s Hospice South West.
The family arrived at Charlton Farm for the first time in January this year.
“We felt like we were scooped up and looked after,” said Dana.
Being at Charlton Farm made us feel that we were not so isolated, that we weren’t always coping on our own
“They could actually ‘see’ us and understood how tough it is. They knew we were doing our best, but they could also see that we needed help.”
The staff at Charlton Farm helped organise a care package for Zeniah while at home to support the family with the resilience stays at the hospice giving the whole family the time needed to rest and recharge.
There is no judgement, the staff know how tricky things can get for us as a family and every single one of gets receives everything we need while at Charlton Farm.
“For the first time in 5 and a half years someone apart from Marc or I put Zeniah to bed. She felt so comfortable, at ease. Everything the staff do there is with such love, such care and at the right pace for Zeniah.”
Sister Kirianna, 11, has also thrown herself into fundraising for CHSW since the family was introduced to the hospice.
She has organised cake sales, an Easter trail around her neighbourhood and a charity netball tournament at the school in Bristol where she plays the sport.
As well as organising 10 teams from across Bristol and Bath to compete, Kirianna also collected prizes from local businesses for a raffle.
The hospice also provides vital sibling support for Kirianna.
“While at Charlton Farm, Kirianna meets children who have a shared life experience. There is that shared understanding about what it’s like to be the sibling of a life limited brother or sister.”
Dana says the support of CHSW has changed her family’s life.
“It’s been transformational,” she said.
We feel we have someone in our corner at all times. They want to see you not only succeed as parents, but as a family
“Charlton Farm has been a real turning point for us. We feel like we can breathe again and that life is a lot more manageable than it once was.”