From Mail Online, By Graham Smith, 11 September 2012 –
A baby who was given just a 3 per cent chance of survival at birth has beaten the odds to come home after six months in hospital.
Tiny Jacob Reed has spent every day of his life clinging to survival in hospital, fighting an ultra-rare condition.
His chances of survival were so slim, that before he was born doctors told his mother Pippa Stanley, 26, that she should abort him a dozen times.
But Jacob fought on and has finally been taken back to the family home in Burton-on-Trent, Staffordshire, for the first time.
Miss Stanley said: ‘The doctors all said he had no hope, no hope at all – but now he’s home.
‘We were told he had a 3 per cent chance of survival but as each week passed he just got better and better.’
Jacob was born with a disease which affects just one in 3.5million children called internal and external juvenile xanthogranulomatosis. It is so rare, British doctors have only seen 30 cases in the last 150 years.
He has been on the brink of death several times and once even had to be resuscitated by his own mother.
But now, in spite of doctor’s dire predictions, Miss Stanley can finally give her son his first cuddles.
Miss Stanley and her partner Tim Reed, 32, were overjoyed when they found out they were expecting twins in September last year, 12 months to the day after suffering a heartbreaking miscarriage.
But problems became apparent 12 weeks into the pregnancy and the couple discovered that one of the twins had sadly died.
The pair feared that the tragedy of September 2010 would be repeated two-fold.
But Jacob refused to give up his chance of life, something he proved a month later when his mother’s waters broke.
At 16 weeks, Miss Stanley’s amniotic fluid began to leak, prompting doctors’ concerns that his lungs would not grow without it.
At 25 weeks, she was rushed to Oxford’s John Radcliffe Hospital, which specialises in premature births.
Doctors there said his chances of survival were so small they repeatedly advised Miss Stanley to terminate the pregnancy.
They warned Jacob would be deformed and would struggle to live outside the womb.
But on February 29, Jacob was born weighing just 2lb 10oz and breathing on his own.
Miss Stanley said: ‘When we discovered Jacob was still clinging on in the womb, it was like my miscarried son had sent me a little part of himself back from heaven to say “there’s a bit of me living on with you”.
‘But then with the amniotic fluid, it was just a waiting game, every minute, every second.
‘I was a ticking timebomb waiting to go off. My life was on a knife edge.
‘Doctors said they would not help him breathe if he failed to take his first breath. It was such a difficult time.
‘But then he did and I was elated, amazed and thrilled. It was like my little, wonderful boy had stuck two fingers up to the doctors who had not believed in him.’
Jacob was transferred to Birmingham Children’s Hospital where he received treatment on an enlarged liver and physiotherapy on a squashed foot.
However, terror struck when Jacob was just 11 days old after he stopped breathing and his lips turned blue in his mum’s arms following sedation for a blood transfusion.
Fortunately, First Aider Miss Stanley reacted immediately and administered CPR to her newborn.
She said: ‘It was the most difficult moment to deal with throughout the last year.
‘I gave him the kiss of life. It was an immediate reaction. My little boy needed help and I had air in my lungs and just gave it to him.
‘I knew what I had to do and I did it. Him turning blue in my arms was horrendous.’
A few weeks after he was born, doctors were stunned when scans revealed Jacob was suffering from the extremely rare condition JXG.
The condition, which is normally benign, causes multiple orange coloured lesions to appear on the skin and without treatment can cause glaucoma and blindness.
However, in Jacob’s case the lesions were also growing inside his body, attacking his blood, bones, lungs and liver and causing jaundice.
Jacob would need five key operations and two dialysis sessions to survive.
He underwent a lung biopsy, a lymph node biopsy, laser eye surgery, the insertion of a Hickman line to administer drugs and two operations to correct hernias.
Doctors also discovered Jacob suffers from retinopathy caused by his prematurity, the same eye condition as Stevie Wonder.
For months, Jacob’s nappy changes and feeds were interspersed with pediatric care, blood and platelet transfusions and countless checks and scans.
But in that time he has amazed doctors with his incredible progress and, still weighing just 17lb, half of what he should weigh for his age, Jacob has finally come home.
Miss Stanley said: ‘Having him home is like winning the lottery but 10 times better. He is gorgeous.’