Parents concerned after Mater Dei loses child specialist

The names have been changed to protect the child's privacy.

Joseph is an active four-year-old boy with a mischievous look, but while he goes about his normal life, he struggles with chronic kidney disease.

Joseph was diagnosed with chronic kidney disease as a baby and later had to have one of his kidneys removed. He leads a relatively normal life, but also a life full of risks, 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 painkillers because they could cause side effects, she tells me.

“If Joseph has a fever or is sick, we cannot take any risks and will take him to the hospital so that tests can rule out a urinary tract infection and he can receive the appropriate treatment,” says Davinia.

Since the beginning of the year, he has been treated three times at Mater Dei and also visited Great Ormond Street Hospital in London, UK, for a follow-up examination.

Davinia says Joseph's regular medications and any other treatment he requires are specifically tailored to his body's needs. The wrong cocktail of medications can have negative consequences, she adds.

Until recently, every time Joseph was hospitalized, he was examined by a pediatric nephrologist. This specialist specializes in kidney problems in children and, together with another specialist, can treat Joseph for any illness without knowing his medical history or the full risks.

“The doctors were familiar faces to me and the fact that they specialized in pediatric nephrology reassured me,” says Davinia.

But a few weeks ago everything changed. Joseph had to go to the hospital because he had a fever, and when Davinia asked to have him examined by the pediatric nephrologists, she was told that the senior doctor had retired and the other doctor had resigned.

“It was a shock because the two familiar faces no longer wanted to treat my son,” Davinia tells me. “Now there is only one junior doctor, who is not a senior doctor, and he tries to treat all the kidney cases in children.”

The Ministry of Health (see response below) confirmed to MaltaToday that the consultant who headed the specialised paediatric renal service “retired early and did not wish to renew his service”. 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 specialists caused Davinia great concern.

“Everything indicated that Joseph did not have a urinary tract infection, but the urine culture results were not yet available and the specialist (not a nephrologist) who examined him was still willing to discharge Joseph from the hospital. I refused because in all other cases the nephrologists had only discharged Joseph after these test results were available,” says Davinia.

She spent four days at her son's side, making sure that the medications and treatments given to him by the ward doctors did not harm his health.

“I've constantly asked what medications and treatments he's getting, but that decision shouldn't be mine… it just makes me nervous because if I give my son the wrong painkiller or the wrong antibiotic, it could have serious negative consequences,” she says.

An encounter with death at Christmas time

Davinia's worries may seem exaggerated, but they are not entirely misplaced. When her son was two months old, she almost lost him because the doctors kept telling her there was nothing wrong with him.

“It was Christmas four years ago and the nephrologist and the other specialist were not available. The doctors on the ward kept telling me that my son was fine, but I could see his health deteriorating. When the specialist returned from abroad and visited Joseph, she immediately noticed that the blood values ​​were bad and immediately took him to the emergency room,” says Davinia.

She shudders as she remembers this horrific experience. She gets goosebumps.

“I thought for days about having to bury my own son at Christmas until he finally made it,” says Davinia. “That's why I'm scared if Joseph isn't seen by a pediatric nephrologist who understands the risks associated with his condition and the complexity of the treatment he needs to receive.”

She is baffled that the hospital did not have a succession plan to replace the pediatrician after his retirement. Mater Dei Hospital currently has no pediatric nephrologist other than a doctor in training, causing great concern among parents of children with kidney disease.

In a response to MaltaToday, the Ministry of Health said the two resignations were “unforeseen” and that an international tender had now been launched for the position.

The paediatric specialists set up the clinic in 2014 and the decision at that time meant that most children with kidney disease could be treated at Mater Dei Hospital rather than having to be sent to the UK for treatment.
But the peace of mind that the parents had developed over the past ten years has now been shattered, and Davinia is not the only one expressing concern about this matter.

“The challenges posed by my son's health are already a huge burden for the parents. The last thing they need is the frustration of not having a specialist at Mater Dei Hospital,” she tells me.

Davinia is aware that her son will be sent to the UK if he needs treatment that is not available in Malta, but she is afraid of the immediate care he will receive at Mater Dei if he needs to go to hospital.

“The resident is a wonderful person, but she is dealing with a heavy workload. What happens if she is on sick leave or vacation, as is her right?”

Davinia's question is as heavy as that of a worried mother fearing for her son's well-being. She expects health authorities to take the necessary measures to ensure that kidney patients like Joseph receive the best possible care from pediatricians.

As summer draws to a close, Joseph is preparing to resume his freshman year of school. In a few weeks, he will be sitting at his desk, playing with friends, drawing, and running around the schoolyard.

Joseph will be a carefree boy, but his mother, in addition to her never-ending concern for his well-being, is also worried about the quality of care her son might receive at Mater Dei.

Ministry of Health: International appeal for aid

The Ministry of Health told MaltaToday that the hospital was in the process of appointing another consultant through an international tender after no one applied for a previous tender.

A spokesman said the specialist doctor who headed the specialised paediatric renal service at Mater Dei Hospital had taken early retirement and did not wish to renew her contract.

“There was a plan to replace the consultant with a specialist, but this specialist resigned for health reasons at the same time that the consultant decided to retire early,” the ministry said.

The ministry described these developments as “unforeseen circumstances” and said the hospital had “ensured that pediatric kidney patients continue to receive the care they need until a new specialist is appointed.”

The ministry spokesman said that children with kidney disease were initially the responsibility of the head pediatrician.

“He is assisted by an adult nephrologist who is trained and experienced in caring for children with kidney problems and who himself cared for these children before the pediatrician took over their care ten years ago,” the ministry added.

In addition, the paediatric nephrology team at Great Ormond Street Hospital in the UK supports the care of these children.

“The current assistant doctor is under the supervision of these specialists,” the ministry said.