COUPLE’S HOSPITAL BABY DEATH ANGUISH
YOUNG parents have described their utter anguish following the death of their baby daughter at just two weeks old.
Chloe Louise Hince, 18, and Josh Simpson, 21, welcomed daughter Arianna-Mai Simpson into the world three weeks early on July 29.
But on August 14 Arianna-Mai lost her life after a five-day battle with liver failure, following a diagnosis of galactosaemia, which ultimately resulted in her developing sepsis.
Parents Chloe and Josh, both from Maerdy in the Rhondda, believe if the metabolic disease which resulted in sepsis had been found sooner, their daughter Arianna-Mai could still be with them today.
“The 16 days we spent with her were the best 16 days of my life,” said dad Josh.
“I wish we were planning days out, our first Christmas, our first holiday, but we are not.
“Me and Chloe are so broken but we will always be grateful to have had an amazing daughter like Arianna-Mai.”
An investigation into the care provided for Arianna-Mai by Royal Glamorgan Hospital is currently under way.
Arianna-Mai was born healthy, weighing 6lb and a half-ounce at the Royal Glamorgan Hospital, Llantrisant, on July 29, 2019.
Just over a week later, on August 9, mum Chloe received a phone call from a metabolic specialist, who said Arianna-Mai’s heel-prick test results came back inconclusive.
They were asked to bring AriannaMai to the Royal Glamorgan Hospital, where they could conduct further tests.
The newborn blood spot test that was carried out on Arianna-Mai is a routine screening test. It checks to see if a baby has one of nine rare but serious health conditions – such as sickle cell disease, cystic fibrosis or inherited metabolic diseases.
However, the test does not screen for galactosaemia, although newborns in other countries, including the US, are tested for it.
The UK National Screen Committee (NSC) – which advises ministers and the NHS in the four UK countries about all aspects of screening – currently does not recommend screening for galactosaemia among newborns.
The reasons given are: It does not prevent long-term problems caused by the condition; they may identify babies with the condition who may never present symptoms; and babies who are more severely affected would develop symptoms before the screening test result was available.
According to the UK NSC, babies with galactosaemia usually exhibit, in the first days and weeks of life, feeding difficulties, vomiting, jaundice, failure to thrive, and liver and kidney disease due to their inability to convert galactose, a sugar present in milk, into glucose, the sugar used by the body.
Public Health Wales has been contacted for comment on the case.
“I believe now that if Arianna-Mai was tested at birth all of this could have been prevented and our beautiful girl would still be here now,” said Chloe.
“This test should be available for everyone everywhere in the world.”
According to the parents, when they arrived at the hospital doctors took Arianna-Mai away to carry out some blood tests.
Josh and Chloe claim that they were told doctors were unable to get enough blood out of their daughter so they had to wait a few more hours to try again after Arianna-Mai had had a feed.
But, according to the parents, they later found out that a vial of blood they took from their daughter the first time round was dropped – which was the real reason they had to draw more blood.
This delayed the formal diagnosis and also meant that Arianna-Mai was given milk by the hospital which was toxic for a baby with her condition.
The parents were advised they needed to stay in the hospital with Arianna-Mai until a diagnosis was given.
They believe nurses should have been aware of how toxic the milk is for babies with galactosaemia, as they had been admitted to hospital due to concerns over the inconclusive test that screens for metabolic diseases.
“After they took the second bloods she started to get lethargic and stopped feeding. We raised our concerns about this but they didn’t seem concerned and said, ‘Try again when she’s due her next feed.’ Six hours without feeding went by until they put her on a feeding tube,” the parents said.
“Knowing our daughter has never had problems with her feeding before was very concerning for us.”
Arianna-Mai also had jaundice at the time.
Later on that night Arianna-Mai started to become irritated and stressed. Chloe said her daughter was constipated and had a swollen bottom, and that there were even signs of blood.
They said when they raised their concerns about their daughter’s condition, they were told she just needed winding, which didn’t make sense to the parents as she had not fed for a number of hours.
After a high-stress night, Chloe and Josh were informed that their daughter had galactosaemia.
One of the first things the consultant said to the parents was that their daughter should not be fed with the milk provided to them.
According to the NHS, galactosaemia is an inherited metabolic disease caused by defects in galactose metabolism.
The commonest form is classical galactosaemia, which is associated with progressive symptoms after milk feeds such as vomiting, diarrhoea, jaundice, liver dysfunction and sepsis, which if untreated can result in life-threatening complications.
“Due to having this condition and it not being found earlier, Arianna-Mai’s liver had started to fail considerably and we were told she would have to be transferred to Birmingham hospital where the liver specialists were.
“At this point there were no spaces available but the Birmingham specialist advised to transfer her to Cardiff because there was an intensive care ward that could care for her,” added Chloe.
Due to the high level of care that Arianna-Mai required, she was transferred to the University Hospital of Wales in Heath, Cardiff, by the WATCH (Wales and West Acute Transport for Children) team.
Chloe said it was at this point that they found out the first vial of blood was dropped and lost, as she heard the team talking about her medical history.
At the hospital in Cardiff, Arianna-Mai received a brain scan, which highlighted a few changes to her brain, but her parents were told it was nothing to worry about as this was normal for babies with liver failure and galactosaemia.
On the morning of Sunday, August 11, a bed became available for Arianna-Mai at Birmingham Children’s Hospital.
Things were starting to look better for Chloe and Josh’s daughter while at the hospital, and the doctors even began planning for her future by advising dietary requirements.
However, things took a turn for the worse when Arianna-Mai’s blood pressure shot up, prompting the doctors to carry out a more in-depth brain scan.
“At this point we were confused as we thought she was getting the brain scans every couple of hours and everything was fine.
“When she came back from the scan we were then told one pupil was 4mm dilated and the other was 5mm dilated and neither were responding to light.”
Josh said they were told Arianna-Mai had contracted sepsis, which caused her brain to swell so much it pushed through her skull and fell into the back of her neck.
Chloe and Josh were told that AriannaMai had just a 1% chance of survival.
Arianna-Mai was transferred back to UHW, Cardiff, where she was being kept alive on life support.
“After the machines got knocked off, she was still breathing on her own for at least three hours or even longer.
“Nurses then told us that they would advise giving Arianna-Mai morphine to help her with the pain to help her pass comfortably.
“Within the hour, beautiful AriannaMai lost her fight for life.”
The University Hospital of Wales offered the couple bereavement services, which they declined.
Staff also gave the couple footprint photos and a box full of things for Arianna-Mai.
Chloe and Josh now believe that the smashed vial of blood resulted in devastating consequences for their daughter as it ultimately delayed her diagnosis, hours during which Arianna-Mai was fed milk that was toxic for her condition.
They said their daughter clearly had signs of sepsis, including making grunting noises, not having a wet nappy for over 12 hours, no interest in feeding, and green bile.
They now believe all the signs of sepsis were there but were not picked up on and treated fast enough.
A spokeswoman for Cwm Taf Morgannwg Health Board said: “Losing a baby is a devastating experience and our thoughts are with the family at this extremely difficult time.
“While we cannot comment on the circumstances surrounding individual cases, we can confirm an investigation is currently being undertaken into the care provided to Arianna-Mai.”
Arianna-Mai’s death follows dozens of serious incidents of stillbirths and neonatal deaths that went unreported at the Royal Glamorgan Hospital, in Llantrisant, and Prince Charles Hospital, in Merthyr Tydfil.
An independent review into maternity services at Cwm Taf Morgannwg Health Board uncovered damning failures in the care of women in childbirth and afterwards. The independent panel found there was no “quick fix” and sustainable results at the maternity ward could take five years.
The maternity services were put in special measures – the Welsh Government’s highest level of intervention.
Last week it was announced that Allison Williams, the chief executive of Cwm Taf Health Board, would not be returning to her post after being on sickness leave since June 19.
Amid plans to concentrate services at fewer sites, the Royal Glamorgan lost its consultant-led maternity and neonatal services in March.
This means that women who require consultant-led treatment throughout their pregnancy will no longer be seen or give birth at the Royal Glamorgan Hospital, but instead will mostly be seen at the newly renovated Prince Charles Hospital.
Since the changes came into place, there have been five transfers of women and their newborn babies between the Royal Glamorgan to the Princess of Wales.
A second downgrade of services was due to come into place on the children’s ward at the Royal Glamorgan Hospital but was delayed earlier this year.
The health board initially planned to reduce services at the Llantrisant hospital from June 1, meaning severely ill or injured children would no longer be treated there.
Ambulance crews with a seriously ill or injured child on board would also have to travel to the “most appropriate hospital”, which could mean bypassing the Royal Glamorgan.
A new date has yet to be announced but the health board is working with staff to confirm a revised date for the move.
A spokeswoman for the health board said: “Our priority is to ensure a safe and seamless transition of these services and, with this in mind, we believe that some further work is needed and we have decided to postpone the move to next year.”
The family has set up a GoFundMe page in memory of Arianna-Mai, which will help the young parents with the funeral costs and contribute to the cost of a bench in her memory.