Tragedy at 11 days: Tommy Pye's condition was spotted too late for medics to treat him
Natasha Pye has a picture of her newborn son Tommy that she treasures. It's just a snap on her phone when he was 11 days old.
But it's the last picture Tommy stopped breathing.
'We'd gone to see my grandparents and came home early because Tommy was screaming and would not settle -which was unlike him,' recalls Natasha, 29, who lives in York with Andy, 30, who works in construction, and theirs Children – Farrah, two, Albie, one month, and Imogen, seven, Natasha's daughter from a previous relationship.
Tommy down next to me for a second. When I went to pick him up again, his chest was not moving and he was pale. '
What unfolded next what, she says, 'just panic'.
Tommy while Andy phoned to ambulance. At some point the ambulance arrived and were bundled inside. They tried everything, injected them, they tried shocking him, but I knew – I just knew.
'I want to go to the hospital and not want to go inside. I thought if I do not go in, they can not tell me my baby is dead – and then it's not real and I do not have to accept it. '
Tommy, but it was too late.
That night in A & E, in February 2015, the couple were asked if they wanted a priest to Christian Tommy, and a ceremony was hastily arranged. Then they were taken to a bereavement suite.
'I was in shock by that point,' says Natasha. I was floating in the air watching it all like a TV show. I can not explain the pain of losing your baby – it's indescribable. '
His anticipated arrival: Natasha Pye, from York, with baby Tommy shortly after his birth
Missed opportunity: Natasha (pictured left with her baby), knows that Tommy's death has been a simple screening test. Right, with his father
His parents were reading the following day that he had a heart condition called transposition of the great arteries flows to the lungs and picks up oxygen but is then pumped back to the lungs instead of the body.
It's unclear why this happens but it is treatable with surgery – however Tommy's condition had gone undetected.
As Natasha and Andy now know, Tommy's death has been a simple screening test.
I remember getting to the hospital and not wanting to go inside. I thought if I do not go in, they can not tell me my baby is dead – and then it is not real and I do not have to accept it.
The test is painless, gives a reading in ten seconds and does not require expensive equipment or specialist training – in fact it uses technology that is already in every hospital and used to measure the levels of oxygen in a patient's blood.
Known as a pulse oximeter, this is a small clip attached to a monitor that fits over the end of a patient's finger. It depends on how much light there is and how much it is absorbed.
Andrew Ewer, a professor of neonatal medicine at the University of Birmingham, explains that "It is a serious problem with the heart.
Today, a new campaign by the Charity Tiny Ticker is calling for pulse testing every newborn.
More than 1,000 newborns leave hospital every year with undetected and potentially life-threatening heart conditions – but screening for low oxygen levels could not prevent this.
Low oxygen levels can be found in Tommy's case as a problem with the structure, a narrowing of the main blood vessel, or a problem with the anatomy of the blood vessels.
Tragic: Tommy had transposition of the great arteries, where – due to abnormal development in early pregnancy – the two main blood vessels are the wrong way round
Treatment would vary according to the condition, but may involve a surgery or even a transplant.
In Tommy's case, surgery had to be done around the normal positions.
Currently, heart defects in babies are about to be examined during the 20-week pregnancy scan or through physical examinations shortly after birth (for example, if the baby has a heart or weak pulse, which may suggest a heart problem).
However, some babies still slip through the net: 'We're still missing half of cases on scans, and around a third in total,' says Professor Ewer.
Natasha's 20-week scan, but it was decided that it was too serious, so no further checks were done. Nor were any concerns raised after Tommy was born.
'I did say to the midwives and the GP that he was very blue and cold,' says Natasha. 'So he hardly crashes – the night he dies.
'But everyone kept saying he was fine and it takes some babies a while for their circulation to get going properly.'
It can take a little time, says Professor Ewer. Naturally, babies are in the womb, their oxygen levels are naturally low, they are babies are blueish when they're born. Then the lungs and heart start adapting and most babies quickly get up to normal levels – but a small proportion takes a little longer to adapt. '
The routine way to assess babies visually after birth, based on their color, is just not reliable, he says. 'A baby could have low oxygen levels and still look healthy.'
This is why there are calls for routine pulse oximeter tests on newborns. These would be done within 24 hours of birth – a reading of 90 cent cent oxygen saturation or less. Immediate investigation with blood tests, chest x-ray and ultrasound.
If the oxygen level is between 90 and 95 per cent, then the pulse oximeter test is repeated an hour or two later.
Family ties: Natasha Pye from York, with partner Andy McKellar and their newborn baby Albie (left) with other children, Imogen (7, front) and Farrah (2, right)
A landmark UK study in 2011, led by Professor Ewer, piloted the screening test in 20,000 newborns in six maternity units and found it to increase the life-threatening heart defects to 92 per cent.
This study concluded that there were over 10,000 healthy newborns screened, six would have a serious life-threatening heart problem. The pulse oximeter test could correctly identify five of those cases.
So why is not pulse oximeter testing part of mandatory newborn screening? 'I've been asking this question for years,' says Professor Ewer. 'Since our 2011 study, other countries have been quicker to adopt it. Every baby in the U. is screened, as well as Germany, Spain, Poland, and many of the Nordic countries.
There is nothing wrong with it. There are also concerns about having a small number of healthy babies to needless further testing.
'Yet it's noting that in around 80 per cent of those cases, another condition is detected – such as an infection or a respiratory problem such as pneumonia. So if it can pick up other health problems, that's a bonus. '
The Government's National Screening Committee is reviewing the evidence for mandatory testing. In the meantime, Tiny Tickers
Around 40 per cent of UK are 330 machines, at a cost of £ 725 each, are needed so every maternity unit can follow suit.
York Hospital, where Tommy was born, starts doing routine pulse oximeter testing several months after his death, after Natasha raised it with them.
'I cried when they told me they saved two babies since bringing in the test. One had the same condition as Tommy, 'she recalls.
When her youngest son Albie was born in October, he gave the pulse oximeter test, which he passed – a bittersweet moment. Albie had a mild form of bronchitis, and so was kept in hospital for monitoring.
Fortunately, his parents were able to bring him home safe and well.
It's a mix of emotions seeing him and the pulse oximeter test, says Natasha. 'The midwife was wonderful, she actually said to Albie:' This test got in because of your big brother. This is all because of your brother. "
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