Boy is ‘half a human’ with one lung and kidney
‘Medically impossible’ boy born with just one lung and kidney and his heart on the wrong side defies slim odds to survive and reach his third birthday
- Frankie Shopland was born ‘half a human’ and there is no name for his rare case
- Parents Amie Grant and Kerry Shopland refused a termination
- Frankie was born eight weeks premature and has barely left hospital since
- He has had two major surgeries, including one to inset a plastic lung
- Doctors are unsure of his prognosis as he cannot receive donor organs
A boy born with only one lung, one kidney and a heart on the wrong side has defied the slim odds to survive.
Frankie Shopland, three, is described by his parents as ‘half a human’ after doctors discovered most of his body was empty in the womb.
Amie Grant, 26, and her partner Kerry Shopland, also 26, refused to terminate the pregnancy when scans revealed something abnormal.
Frankie was born eight weeks premature at 29 weeks in May 2016 and has suffered ill health since, spending more than 800 days in hospital.
He has had two major surgeries, including one to insert a plastic lung, and can’t eat or drink due to spending so much time on a ventilator to support his breathing.
Frankie’s condition is so rare there is no name for it, and is unable to receive donor organs at this point.
Frankie Shopland, three, is described by his parents, Amie Grant and Kerry Shopland, both 26, as ‘half a human’ after doctors discovered most of his abdominal cavity is empty
Doctors discovered that Frankie had one lung, one kidney and his heart on the wrong side during pregnancy scans. Pictured, an X-ray showing the emptiness on his left side
Frankie was born eight weeks premature (pictured) at 29 weeks and has suffered ill health from day dot, spending more than 800 days in hospital in his lifetime
Despite everything, his parents, from south east London, are optimistic. Ms Grant, a mother-of-three, said: ‘They said they’d never seen anything like it.
‘The next question was “Do you want a termination?” But we never even had the conversation. We just both went on the spot: “No.”
‘All we kept thinking was “It’s his choice”. If his heart was functioning fine and there was no sign of any other problem, give him the chance. And that’s what we did.’
Mr Shopland added: ‘We just knew he was going to make it. We knew he was going to be a special baby. And he is.
‘He’s technically half a human, but to us he’s everything.’
Ms Grant was ecstatic to discover she was expecting her first baby in autumn 2015.
However things went awry at the baby’s 20-week scan as the sonographer walked out half way through.
‘When that happened I knew full well that something wasn’t how it was supposed to be,’ Ms Grant said.
‘We sat in another little room and we waited for someone to come in and she said, “On the scan it shows the baby has only got one kidney and the heart is on the right side”. I rang my mum and I burst into tears.’
The couple were offered a termination but wanted to give their baby the chance of life.
They were sent to St Thomas’ Hospital for a more detailed scan at 23 weeks, when doctors also began to suspect the baby only had one lung too.
The couple were told they needed two scans a week, but at 26 weeks Ms Grant was diagnosed with pre-eclampsia.
The condition – which causes high blood pressure and protein in the urine – meant Ms Grant had to spend long periods resting.
At 29 weeks, the baby was in distress and doctors rushed Ms Grant for an emergency caesarean on May 29.
The couple were offered a termination after pregnancy scans showed abnormalities. But they wanted to give their baby the chance of life and refused
Frankie was put on a ventilator but amazed doctors by pulling it out and breathing unaided on the ninth day after being born at 1lb 13oz. Pictured in intensive care
Frankie was discharged three months after being born (pictured). But he was back in hospital two months later when his mother noticed he had turned grey
WHAT HAS FRANKIE’S LIFE BEEN LIKE SO FAR?
At 20 weeks, autumn 2015: Doctors discover Frankie has one kidney and his heart is on the wrong side
At 23 weeks: Doctors suspect he also has just one lung
At 29 weeks, May 29 2016: Frankie is born premature
September 2016: Discharged after three months in intensive care on a ventilator
November 2016: Back into hospital where it was found he had bronchiolitis
Christmas 2016: Frankie spends at hospital and has two major operations in January 2017.
December 2017: Frankie is able to go home after spending a year in hospital
September 2018: Returns to hospital with illness as a turn in weather causes breathing difficulties
May 2019: Turned three and discharged from hospital
Frankie was born with his umbilical cord wrapped around his neck and was rushed to the neonatal care unit. He weighed just 1lb 13oz. The couple named him after Chelsea fan Mr Shopland’s hero Frank Lampard.
Ms Grant said: ‘We got told before I went in that he might die. I just said “no he’s not”.
‘We didn’t show negativity, we didn’t speak negatively, it was Frankie’s path, his journey and if he was going to make it he would make that footprint for himself. We didn’t want to doubt him.’
Frankie was put on a ventilator but amazed doctors but was able to breathe unaided on the ninth day.
According to his parents, Frankie was found by nurses with his breathing tube pulled out.
By a month old – when he should technically have been just 30 weeks’ gestation – Frankie was off all support and was only being given a sprinkling of oxygen to help him cope with having one lung.
He was discharged after three months.
But by November 2016 – two months after going home – Ms Grant noticed Frankie turning grey and he was rushed back to St Thomas’.
There, doctors found he had bronchiolitis – a viral infection of the airways – and pneumonia.
They worked to stabilise him and used a camera to further investigate his condition, discovering that not only did he definitely only have one lung, he also had narrow airways which had grown into the area where his lung should be.
Although he was sent home, by Christmas Frankie was back in hospital and his family was told he was so poorly he would have to stay there.
Meanwhile, Mr Shopland and Ms Grant had to move permanently to a Ronald McDonald House near to Evelina London Children’s Hospital, where Frankie was being treated.
Despite that, they still had to shell out £1,000 a month in bills on their house, meaning Mr Shopland had to stay in full-time work as a delivery driver.
During their stay Ms Grant discovered she was pregnant with the couple’s second baby, Delilah Rose, now two.
Frankie has now undergone two major operations at Great Ormond Street, estimated by his parents to cost the NHS £5million.
Mr Shopland and Ms Grant had to move permanently to a Ronald McDonald House (pictured) near to Evelina London Children’s Hospital, where Frankie was being treated. They have only had him home for a nine months at a time
Ms Grant said they couldn’t fathom why Frankie was born with his condition, especially as their other two children – Delilah Rose, two, and Valencia, eight months – are completely normal
Frankie has had two major surgeries, including one to insert a plastic lung, and can’t eat or drink due to spending so much time on a ventilator to support his breathing. He still needs to use a ventilator (pictured), but he likes everything other boys his age likes
One was to insert a plastic lung on his left side to act as scaffolding to keep his organs in the right place.
And two weeks later, he was given another surgery to widen his airways by a specialist surgeon flown in from Boston.
Because Frankie was unable to use his vocal chords for so long due to being ventilated, he is unable to speak or drink and needs a feeding tube in his stomach.
After a year recovering in hospital, Frankie came home in December 2017 and managed to stay there for nine months.
But as soon as the temperature dropped, he became sick again and ended up back in hospital.
Frankie, who turned three at the end of May, was finally discharged this week – but is still unable to speak or drink liquids.
Although transplants are not currently an option, it may become a possibility as medicine advances.
His prognosis is unknown as there reportedly has never been another case before, so Ms Grant and Mr Shopland are simply taking each day as it comes.
Ms Grant said they couldn’t fathom why Frankie was born with his condition, especially as their other two children are completely normal.
She said: ‘We’ve had tests done at GOSH to tell us why he was born like this and they just can’t tell us.
Mr Shopland added: ‘That is one thing we’d love to know – is there another Frankie or is he the only one?
‘It’s undiagnosed in this country but who is to say there’s not another one somewhere in the world?’
Frankie is just like any other little boy, who loves being outdoors, going to the park, climbing, Peppa Pig, dancing and blowing bubbles.
Now Frankie’s mum and dad – who have since had a second daughter Valencia, eight months – hope to discover whether any other kids around the world have the same condition.
Praising the NHS and Ronald McDonald House, which provides accommodation for seriously ill children while they spend long periods in hospital, Ms Grant said: ‘Both have allowed our family to stay together, which is wonderful.’
Mr Shopland added: ‘If the NHS wasn’t here, my son wouldn’t be here. It makes you a bit tearful.’
Dr Shelley Riphagen, consultant in children’s intensive care at Evelina London Children’s Hospital, said: ‘The health problems Frankie was born with are rare. He is a very unique little boy and has undergone many complex operations and procedures to improve his condition.
‘He continues to be cared for by multiple teams at Evelina London, and has done so since he was a baby. We are all very glad that Frankie is doing well and spends quality time at home with his family.’
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