I’m scared my son will die every time he cries: Baby’s windpipe could collapse at any moment
Christmas in hospital: Rio-James with his mother, Nikky Hallett – and Santa. The little boy will need an operation on his heart but his weak windpipe may heal itself
New mothers often worry every time their baby starts to cry, but Nikki Hallett is more concerned than most.
Her 18-week-old son, Rio-James Jacombe, suffers from trachea bronchial malcia – a condition that has left his windpipe so weak it risks collapsing each time he cries out.
His wailing makes 44-year-old Nikki incredibly nervous, she has even learnt CPR so she is able to revive her son.
The condition could heal itself – doctors will not know if they need to operate until he is two years old.
However Rio-James, who was born five weeks premature, also has other health problems. He has Down’s syndrome, two holes in his heart and is unable to suckle, so he has to be fed through a tube.
Nikki, from Grimsby, Lincolnshire, said: ‘Rio weighed only 3lb and 11oz, but he seemed fine at birth. Then, two days later he was diagnosed with multiple problems.
‘He went floppy and grey because he had stopped breathing. I was devastated.
Baby Rio-James: The 18-week-old baby was was born five weeks premature. He also has Down’s syndrome and two holes in his heart
‘My worst fear is when he cries, because it could be fatal. If his windpipe collapses totally, that could be it.
‘One day he burst out crying and he turned a red and purple colour, so I rushed him to hospital to get him breathing again.
‘I have even had training to resuscitate him, and I have to lay him flat to help him breathe.
‘It is very scary. I keep an eye on him all the time to make sure he is breathing.’
Sheffield’s Children’s Hospital cared for Rio-James for five weeks – three of which he was on a ventilator to help him to breathe.
Staff there have warned Nikki that he will also need open heart surgery when he reaches the age of three. But they hope that his windpipe will heal itself.
Nikki is optimistic about her son’s condition.
She revealed that he smiled for the first time when in the sensory room for Down’s Syndrome patients at the hospital.
Nikki said: ‘It was a magical moment, and they helped to stimulate his vision. He could also feel and sense things and he really enjoyed himself.’
Loving family and friends: Rio-James with his mother Nikki (left), her friend Jade Harvey (centre) and Rio’s sister Sophie Andrews Touched by Rio-James’s story, friend Jade Harvey-Gardner is now hoping to put that smile on his face on a more permanent basis – by raising money to convert the dining room of Nikki’s home into a private sensory room.
Jade, 23, of Nunsthorpe said: ‘I was touched by his story and Nikki told me about how he lit up when he was around the sensory lights.
‘She told me she wanted to turn her dining room into a light sensory room for Rio, but it would cost about 400. It gave me an idea to raise money for lights with flashing patterns and colours that Rio could enjoy.
‘I have been raising money by donation boxes and so far I have raised nearly 300.
‘Rio is such a happy little boy and he deserves all the help he can get.’