Gabriell Camilleri-Nugent was born with hyperextended knees and bronchomalacia, this mean his lungs and airways are too small for him to breathe on his own. In a 20-week old womb, scan showed Gabriell’s legs were doubled back near his head rather than being curled up in the foetal position.
His family shocked in December when he was born and said he looked like he was doing the splits’ as his knee caps are effectively back to front. He is of 6 months now and has worn plaster casts on both legs since birth but he is still waiting to be transferred to a specialist hospital for treatment.
His grandmother, Carol said the youngster’s health is being compromised by NHS bureaucracy. His mother said that ‘Gabriell is still in neo-natal just lying in his cot. He has never been outside and they can only pick him up on a good day.
He added “He has got lung problems and dislocated knees but we don’t know if that’s a particular syndrome because he has not been assessed since he was three weeks old. Nobody wants to take control and the hospitals just kept moving the goal posts. We don’t know when or where he can be treated because no one wants to take him.”
‘The nurses have been wonderful and are backing us but officials are stopping him being treated. It’s disgusting how the NHS is treating our children.’
At the time of Gabriell’s born doctors quickly realized he needed to be transferred to a specialist unit. But when he was sent to the Royal Brompton Hospital in London at three weeks old and weighing just under 4lbs so he was too weak for surgery.
So he was transferred to the Lister Hospital in Stevenage, Hertfordshire to gain weight. His parents were told to go back to the Royal Brompton when he hit 7lbs, but although he achieved this aged three months in March, he is still waiting. Royal Brompton said Gabriell (baby) needed to be heavier still and they had no free beds.
Gabriell remains in the neo-natal unit in Lister Hospital where they lack the specialist expertise to treat him. His family was told he is third on the waiting list to be transferred to Great Ormond Street Hopsital four weeks ago but was given no clues as to how long this could take four weeks ago.
Gabriell has been permanently attached to a continuous positive airway pressure (CPAP) machine to help him breathe since birth. He has dysmorphic features and he wears plaster casts on both legs and contracted the E.coli virus twice and pneumonia once.
His parents trained to be a football coach said they felt let down by the NHS and frustrated with the delay in getting Gabriell to a specialist unit.
His mother said: ‘I spend around eight hours day at the hospital, at least five days a week, and rely on lifts from family and friends to be able to see him.
She said ‘It’s been awful for us. I haven’t even been able to hold my own baby or feed him without a nurse being present. Our focus now is to get him into Great Ormond Street, that is the only hospital left that will be able to treat him. After six months of him just being kept alive at Lister we just want to get him treated and given a proper diagnosis as we still have no idea what is wrong.’
A spokeswoman for Royal Brompton Hospital, a specialist heart and lung centre, insisted they were not the best place to treat Gabriell’s severe health problems.
She said ‘We have been in discussions with colleagues at Lister Hospital about the best treatment for baby Gabriell for some time. ‘Given Gabriell’s complex medical condition and multiple organ problems we feel that he would be best cared for at a specialist centre that can treat all his needs.’
A spokesman for the Lister Hospital said Gabriell’s needs are highly specialist and he is need of complex treatment.
He said ‘We are helping support him with breathing and developmental requirements but we don’t have the specialism or resources to do more.
‘The actual treatment he needs has to be provided by a specialist centre like Great Ormond Street or Royal Brompton.’