The boy with one kidney: Parents worried after Mater Dei loses child specialists
After Mater Dei Hospital lost two specialist renal child doctors, a mother tells Kurt Sansone she is anxious and concerned over her son’s fate.
Names have been changed to protect the privacy of the child.
Joseph is an active four-year-old boy with a mischievous look but as he goes about his normal life he has to contend with a chronic kidney condition.
Joseph was diagnosed with chronic kidney disease as a baby and later had one of his kidneys removed. He leads a relatively normal life but one that is also fraught with risk, his mother Davinia tells me as we sit at the kitchen table.
A urinary tract infection could be fatal for Joseph’s only kidney and he cannot take certain antibiotics and pain killers because they may cause a negative reaction, she tells me.
“Whenever Joseph runs a fever or is sick, we cannot take any chances and take him to hospital so that tests can rule out a urinary tract infection and he can receive the appropriate treatment,” Davinia says.
Since the beginning of the year, he has been hospitalised three times at Mater Dei and also visited the Great Ormond Street Hospital in London, the UK for a follow up check-up.
Davinia says Joseph’s regular medication and any other treatment he requires is specially tailored to his body’s needs. The wrong medicinal cocktail can cause negative consequences, she adds.
Until recently, whenever Joseph was admitted to hospital, he was seen by a consultant who is a paediatric nephrologist. Specialised in renal problems that afflict children, the consultant and another specialist doctor would know how to treat Joseph for any ailments without having to understand the backstory and with full knowledge of the risks.
“The doctors became familiar faces and given that they were specialised in child nephrology helped put my mind at ease,” Davinia says.
But this all changed a couple of weeks ago. Joseph had to be hospitalised because he was running a fever and when Davinia asked that he be seen by the paediatric nephrologists, she was informed that the consultant had retired and the other doctor had resigned.
“It came as a shock because the two familiar faces were no longer going to treat my son,” Davinia tells me. “Now, there is only one trainee-doctor, who is not a consultant and who is trying to cope with all paediatric renal cases.”
The Health Ministry (see reply below) confirmed with MaltaToday that the consultant who led the specialised kidney service for children “took early retirement and did not wish to extend further”. The ministry also confirmed that the specialist doctor resigned at the same time “for health reasons”.
Joseph was in hospital for four days and the absence of the specialised doctors caused Davinia a lot of anxiety.
“Everything was indicating that Joseph did not have a urinary tract infection but the urine culture test results were not yet out and the consultant (not a nephrologist) who saw him was willing to discharge Joseph from hospital just the same. I refused because in every other instance the nephrologists only discharged Joseph after these test results were out,” Davinia says.
She spent four days next to her son, making sure that any medicine and treatment he was administered by the ward doctors was not detrimental to his health.
“I was constantly asking what medicines and treatment he was being given but it should not be on me to make such a call… it just makes me anxious because giving my son the wrong painkiller, or the wrong antibiotic could have serious negative consequences,” she says.
A brush with death at Christmas time
Davinia’s concerns may appear exaggerated but they are not entirely misplaced. She almost lost her son as a two-month-old baby because doctors kept telling her nothing was wrong with him.
“It was Christmastime four years’ ago and the consultant nephrologist and the other specialist were unavailable. Ward doctors kept telling me there was nothing wrong with my son but I could see his health deteriorate. When the specialist doctor returned from abroad and visited Joseph she immediately realised the blood results were bad and rushed him into emergency care,” Davinia says.
She shudders as she recalls that harrowing experience. It brings goose pimples to her skin.
“I spent days thinking that I would have to bury my own son at Christmastime until he eventually pulled through,” Davinia says. “This is why I get scared when Joseph is not seen by a paediatric nephrologist who understands the risks associated with his condition and the complexity of any treatment he has to receive.”
She is perplexed how the hospital did not have a succession plan in place to have the paediatric consultant replaced upon retirement. Mater Dei Hospital now has no renal doctors specialised in children, apart from a doctor still in training, and this is causing anxiety among parents of children with renal conditions.
In replies to MaltaToday, the Health Ministry said the double resignations were “unforeseen” and an international call has now been issued for the post.
The specialised child doctors had set up the clinic in 2014 and the decision back then meant that for most renal conditions, children could be treated at Mater Dei Hospital rather than be sent for treatment in the UK.
But the peace of mind parents had developed over the past 10 years has now been shattered and Davinia is not alone in expressing her concern over the matter.
“It is already a lot having to deal with the challenges my son’s medical condition brings about, the last thing a parent needs is dealing with the hassle of not having a specialised consultant at Mater Dei Hospital,” she tells me.
Davinia acknowledges that if her son requires treatment that is unavailable in Malta he will be sent to the UK. But she fears about the immediate care he will receive at Mater Dei whenever he requires hospitalisation.
“The trainee doctor is a wonderful person but she is trying to cope with a big workload. What happens if she is on sick or on leave, as is her right?”
Davinia’s question carries all the weight of a concerned mother, who fears for her son’s wellbeing. She expects the health authorities to take the necessary action to ensure that renal patients like Joseph get the best possible care at the hands of paediatric specialists.
Meanwhile, as the summer enters its twilight, Joseph is preparing to continue his school journey in Year 1. In a couple of weeks’ time he will be sitting at his desk, playing with friends, drawing and running around the school playground.
Joseph will be a carefree boy but for his mother, concerns over the quality of the treatment her son could be receiving at Mater Dei have been added to the never-ending worry about his wellbeing.
Health Ministry says international call issued
The Health Ministry has told MaltaToday that the hospital is in the process of appointing another consultant through an international call after nobody applied to a previous call.
A spokesperson said the consultant who led the specialised kidney service for children at Mater Dei Hospital took early retirement and did not wish to extend her contract further.
“There was a plan for the consultant to be replaced by a specialist but this specialist resigned for health reasons during the same time that the consultant decided to take early retirement,” the ministry said.
Describing these developments as “unforeseen circumstances”, the ministry said the hospital has “ensured that paediatric renal patients still receive the care they need until a new consultant is appointed”.
The ministry spokesperson said that in the interim children with renal problems were under the responsibility of the most senior consultant paediatrician.
“He is being assisted by an adult nephrologist who is trained and experienced in caring for children with kidney problems and who used to care for these children before the paediatric consultant took over their care 10 years ago,” the ministry added.
Additionally, the paediatric nephrology team from Great Ormond Street Hospital in the UK is also assisting with the care of these children.
“The current trainee doctor is under the supervision of these consultants,” the ministry said.
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