Family praises ‘transformational’ children’s hospice
The McKee family are looking forward to Christmas 2024 after a year in which their lives have been made easier thanks to Children’s Hospice South West.
Parents Marc and Dana admit that when they arrived at Charlton Farm in January they were at ‘breaking point.’
Looking after their disabled daughter Zeniah, who was born with 4 large holes in her heart, had left the family feeling ‘in bits’ and ‘struggling to cope.
But the support they have received from CHSW has made all the difference, and the family are keen to repay the charity by spearheading its Christmas appeal.
Zeniah and her sister Kirianna are happy to play their part by switching on Clifton;’s Christmas lights.
Zeniah’s story
Zeniah was born in 2019. But quickly after her arrival Dana and 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 two weeks of her life in Southmead Hospital’s Neonatal Intensive Care Unit (NICU) where medics diagnosed a heart murmur, which they said would get better.
“When we brought her home we suspected something wasn’t right,” said Dana. “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 taken by ambulance into hospital where further tests revealed she had four large holes in her heart.
At four weeks old and weighing just 5lb, Zeniah had surgery to band, untangle and reimplant her pulmonary artery, which had wrapped itself around her trachea.
“Her heart was so tiny,” said Dana, “the size of a strawberry and the operation took eight hours. They told us then she had a 50/50 chance of survival.”
Zeniah recovered well from her surgery and after eight weeks was allowed home.
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,” said Dana, “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, two of Zeniah’s holes in the heart healed on their own.
Then in July 2021 Zeniah had a seizure in her pram, leaving Marc to give her lifesaving CPR until ambulance crews arrived. Initially medics thought the seizure may be a one off, but six weeks later, she suffered another and was diagnosed with epilepsy.
In February 2022, the results of the genetics testing came in revealing Zeniah, then three years old, 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 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.
“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 Longwell Green, continued to look after Zeniah at home. A lifetime nurse was eventually appointed to the family who made a referral to Children’s Hospice South West.
“We felt like we were scooped up and looked after,” said Dana.
“Being there 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,” said Dana. “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 five and a half years someone apart from Mark 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 The hospice also provides vital sibling support for Kirianna.
“While at Charlton Farm, Kirianna meets children who have a shared life experience,” said Dana.
“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.”
How you can help
Zeniah is one of 500 children receiving support from CHSW. To support CHSW and discover how you can make this Christmas count for
families like the McKees, visit https://www.chsw.org.uk/make-this-christmas-count