A mother who was told to abort her baby because of a life threatening lung condition which squashed his heart and lungs to his back is getting ready to spend his first Christmas at home.
Ruben Exell was diagnosed with congenital cystic adenomatoid malformation (CCAM) when his mother was just 20 weeks pregnant with him.
Yvonne Exell, from Hull, said doctors realised something was wrong and she had to go to a consultant who explained what CCAM was.
CCAM is a benign mass of abnormal lung tissue which affects just one in 10,000 pregnancies, and can cause premature birth and miscarriage.
Ruben Exell was diagnosed with congenital cystic adenomatoid malformation (CCAM), a rare condition which squashes his lungs when his mother was 20 weeks pregnant with him
‘It’s abnormal tissue in the lungs which squashed his lung and heart right to the side near enough to his back,’ Yvonne told the Hull Daily Mail.
‘I was given the option to terminate the pregnancy as it was unlikely the baby would survive, but there was no doubt in my mind that I would carry on.’
Yvonne was closely monitored, and had to take ‘awful’ steroids through the rest of her pregnancy with Ruben.
But despite the support of her husband Arnie and her doctors the rarity of the condition made her feel like she was on her own.
‘There was no support as no one knew what it was,’ she said. ‘My GP and midwife had no idea and my consultant had only seen five CCAM pregnancies since 2005.
‘I went down to a Harley Street Clinic a couple of times and met one lady there but that was it.’
Despite the support from husband Arnie (pictured), Yvonne Exell felt like she was on her own because Ruben’s condition was so rare and she had been told to consider aborting him
Eventually, Yvonne found a Facebook page, Parents of CCAM Babies, which gave her vital support during her pregnancy.
‘It’s great,’ she Yvonne, who is also mother to Ivan, 9 and AJ, 5, said. ‘Most of the people on there live in America or Australia.’
Yvonne was induced three weeks before her due date on March 30 at Hull Royal Infirmary and baby Ruben was initially born healthy before things took a turn for the worse.
What is Congenital Cystic Adenomatoid Malformation (CCAM)?
CCAM is a condition which can develop in the womb where part of a baby’s lung can grow into cysts rather than lung tissue.
It effects 1 in 10,000 births and can detected on an ultrasound.
In babies with breathing difficulty an operation is usually required. The timing of the operation depends on how the baby is affected.
The more difficulty there is with breathing, the quicker the operation is done.
In some cases this results in the operation being performed in the first 24 – 48 hours of life, and in others the operation is deferred for a few days.
Very rarely, the cysts will have caused failure of the development of the rest of the lung and, despite surgery to remove the cysts, the baby may die.
Source: Southampton Children’s Hospital
‘He came out healthy and was breathing fine,’ she said. ‘It was just three hours later when I went for a shower, came back and he was blue
‘He was taken to NICU (neonatal intensive care unit) but they brought him back down two days later to be with me. They came down to give him his medicine, probably because when he was in NICU I wouldn’t leave.’
His condition means that Ruben, now nine-months-old, will need check ups every six months until he is old enough to have surgery.
Yvonne said: ‘On one of his first check-ups they thought he had a collapsed lung but it wasn’t.
‘He will keep having check-ups until he is well enough for surgery where he will have the bottom lobe of his lung taken off. It was repair itself after that.
‘He will be monitored as there’s no way we can tell how it may affect him in later life.’
For now, Yvonne is looking forward to spending some time with her miracle baby.
She said: ‘We’ll definitely have a big Christmas. It’s so exciting.
‘I still want to make people aware of CCAM and help them see that there is that support out there.’