Every year, The Sick Children’s Trust works in partnership with neonatal charity Bliss to support World Prematurity Day, which takes place on 17 November.
This year we’re shining a light on mental health and wellbeing, with the #NeonatalFeelings campaign highlighting how parents can look after themselves as well as their little ones. Our ‘Homes from Home’ offer a vital source of comfort by keeping families close to their premature babies and giving them space to process their experiences.
In July 2022, Laura and Tracey Stubley Down’s son Jacob was born six weeks early at their local hospital in Stevenage. Despite arriving in far better condition than initially expected, weighing 5lbs 8oz, Jacob’s temperature spiked before a blood test revealed an exceptionally high white blood cell count.
They were soon told that Jacob had possible congenital leukaemia, a rare blood cancer that develops in the womb and is seen in only one of every five million births. Recalling the diagnosis, Laura said:
“It was devastating news for us, with Jacob being blue-lighted to the Neonatal High Dependency Unit at Addenbrooke’s Hospital in Cambridge, nearly an hour and a half away from our home in Hertford. As I was in-patient myself, still recovering from the c-section, it was his other mum who travelled with him to Addenbrooke’s. Having hardly seen him, it was horrible knowing he was going to be so far away from me. I knew Tracey would be with him and keep me up to speed, but all I could think was ‘my son’s got leukaemia’ and I wanted to be there.”
Arriving at Addenbrooke’s
Laura arrived at Addenbrooke’s as in-patient the following day, ensuring that she could stay close to Jacob until she was discharged. However, with nowhere to stay beyond that point, panic set in. Laura said
“Thankfully, we were given a place to stay at Chestnut House, a ‘Home from Home’ run by The Sick Children’s Trust, located directly beneath the ward where Jacob was being treated. It was a huge relief to have this clean, homely, and comfortable place to rest and shower, which allowed us to process everything that was happening.”
Their initial stay at Chestnut House was short lived, with Jacob being rushed to Great Ormond Street Hospital (GOSH) in London for an emergency operation, returning to Addenbrooke’s five days later. The couple spent the next nine days staying in different locations around the Addenbrooke’s site, until a room once again became available at Chestnut House. Laura said:
“Going back to Chestnut House felt like heaven. We were so grateful to be back there and could look after ourselves properly while the hospital focussed on helping our boy.”
Diagnosis finally revealed
After various rounds of testing and many hours of discussion, Jacob was finally diagnosed with Transient Abnormal Myelopoiesis (TAM), a rare leukemic bone marrow disorder that usually only appears in newborns with Down’s Syndrome. Genetic tests showed that Jacob does not have Down’s Syndrome, making him only the 21st reported case of this kind anywhere in the world.
After seven shots of chemotherapy and four blood transfusions, in August 2022 Jacob was finally allowed to go home, much to the delight of his doting mums. Laura said:
“Jacob is now two years old and doing so well. He still gets his blood checked at Addenbrooke’s, but he’s reached this age without any setbacks so has moved from quarterly to half yearly checkups, which is great news.
“He is a very happy, energetic and determined little boy. He is still very clingy to his mummies, which is understandable, but loves rough and tumble play with his Grandad and Uncle Barry. He loves his food too, enjoying pasta, curry, chili con carne, ramen and pretty much anything with peanut butter in it or on it.”
World Prematurity Day
World Prematurity Day, which takes place on Sunday 17 November 2024, is a global movement to raise awareness about premature birth and its impact on families. This year, The Sick Children’s Trust, in partnership with neonatal charity Bliss and their #NeonatalFeelings campaign, is focusing on the mental health and wellbeing of parents with babies in neonatal care. Our ‘Homes from Home’ offer a vital source of comfort by keeping families close to their premature babies and giving them space to process their experiences. Reflecting on how Chestnut House supported the couple’s mental wellbeing, Laura said:
“When your child is born poorly, your mental health is severely tested. As well as having to digest the diagnosis, you also have to deal with the trauma of watching them in NICU, fighting for their life every day. Being offered a room at Chestnut House was a shining light in the darkness of it all. It removed the fear of not being able to stay close to him, while being able to have a hot shower or resting on a warm comfortable bed, reflecting on the day’s events, were an enormous help to us.”
Each year, we help over 600 families with a baby, many born premature, in neonatal intensive care by providing them with a free place to stay close to their child’s bedside. This support takes one major worry off parents’ minds so they can focus entirely on their little one’s recovery.