Baby baffles doctors by surviving against the odds
LIKE any new father Teon Buffong won’t ever forget the first few hours of his son’s life – but tragically it would be for all the wrong reasons.
Seconds after the umbilical cord was cut it became clear that the newborn wasn’t breathing. The medical team started performing CPR and the emergency button was hit.
At the same time doctors were struggling to stem the bleeding of new mother Adrianne Katrosmanos who ended up being rushed in for emergency surgery.
“I just remember feeling completely helpless, desperately trying to keep one eye on Adrianne and the other on my new son,” said dad Teon, recalling the upsetting events of April 5 this year.
While Adrianne, from Cardiff, was undergoing her own procedure, the neonatal team surrounded infant Rameo desperately trying to get a tube down his tiny nose to help him breathe.
He was taken to the neonatal intensive care unit where his doctors spent five days desperately trying to stabilise him and work out what was wrong.
Eventually, after an emergency trip to London’s Great Ormond Street Hospital for exploratory surgery, the baby’s parents were given the devastating news that their son had been born with no upper airway.
He was only alive at all because, incredibly, his food pipe was acting as a substitute for his trachea and his body was able to receive small amounts of oxygen through a tiny piece of cartilage connected to his lung.
“It was something the surgeons had never seen before and they were baffled at how Rameo could even have survived this long,” added Teon.
Rameo was taken to surgery for an extensive operation that his parents were warned he may well not survive. During his seven hours in theatre he was fitted with a tube to provide nutrition directly into his veins and given a blood transfusion.
His surgeons also reformed an oesophagus and fitted a tracheostomy so that he could be ventilated. It’s likely that he will receive food and breathing support like this for the rest of his life.
Because he was so ill Teon and Adrianne said they weren’t able to hold their baby for more than a month.
Teon added: “Not being able to do the normal things is the hardest part. We haven’t been able to do so many of the things we expected to, like introduce Rameo to his big sisters, Renee and Ava, or use the toys and baby things we bought for him that we’ll now never use.
“There’s very little we’ve been able to do for him anyway up to this point but when we couldn’t even cuddle him it almost felt like he wasn’t ours.”
Rameo will need more major surgery when he is 12 months old to fit stents which will make his airway more secure.
For now though his home is the paediatric critical care unit (PCCU) at the Noah’s Ark Children’s Hospital for Wales where he can grow and stabilise before the clinical team try him on a less invasive form of ventilation.
Doctors and nurses admit they don’t yet know how long he’ll need to stay on PCCU before he’s well enough to go onto a ward. It’s one of the many reasons his care team are keen to introduce a new programme called Chwarae PCCU onto the unit.
Decreasing sedation and introducing a daily routine and activities to babies and children in critical care has been shown to result in shorter lengths of stay, and just as crucially, a less distressing experience for families.
The Noah’s Ark Charity want to support the PCCU team by raising funds to make the Chwarae PCCU programme possible.
The funding will provide seating support, sensory equipment, softer lighting, and communication aids for older children, transforming each bed space in to a more familiar and less daunting environment where children will be able to sit up, interact, and play with their parents or carers as soon as possible.
The charity also wants to fund a specialised adapted chair so that children like Rameo can come out of bed more often for cuddles with the people who love them while still being fully supported by the machines they need.
PCCU physiotherapist AnnMarie Newbury, who hopes to head up the new programme, is part of the team developing the initiative.
She said: “Up until now Rameo has only been nursed in his cot while supported by the ventilator.
“Initially this was essential while he was so unstable but as he’s grown and become more stable we want to make sure we provide the best opportunity for normal development – physically, socially, and emotionally.
“We want to try and do this as soon as we can – while obviously keeping him safe.
“A baby of Rameo’s age at home would be in a regular day and night routine, having lots of cuddles from family, and have the opportunity for development through play and in different positions.
Traditionally the PCCU environment isn’t set up for that. In the past they have been very clinical places where most children remain in bed sedated.
“There is now more evidence to suggest that normalising the critical care environment, and introducing mobility and play as soon as is safe to do so, improves experiences and outcomes for children and their families.
“As a PCCU team who want the very best for our young patients we want to challenge previous barriers and facilitate making early development a focus each day both for Rameo and his family and the hundreds of other children we care for on PCCU each year.”
The Noah’s Ark Children’s Hospital is currently making “crisis plans” to deal with the surge of patients this autumn and winter – preparing to double the amount of critical care beds if necessary.