An 11-year-old pupil was brought to the Tallinn Children’s Hospital early this year and the medics were initially unable to diagnose her serious condition. Closer studies revealed as a minor shock that the girl had terminal HIV or AIDS, which claimed her life despite the medics’ efforts. It was too late.
The tragic story may cause a tremor in the systems of the state, since quality treatment would probably have ensured the late girl a long life.
As far as Postimees learned, the child from a well-off family was brought to hospital with sudden but constant muscular atrophy. She had suffered from those symptoms earlier and the situation aggravated in time.
One can live with HIV for approximately a dozen years if left untreated. The terminal stage of infection (AIDS) lasts mostly a couple of years and without treatment has lethal ending.
A computer scan in hospital showed curious lesions in the girl’s head, which led the medics initially suspect a tumour. Repeated discussions and analyses showed that the child had HIV, which had reached the final stage.
That was a serious shock, since the child’s medical records contained no sign of the virus. Although she went to school in Estonia, she had Finnish health insurance. Neither did the parent mention the disease.
The girl was living with foster parents; she had been adopted in an early age. It is not being investigated whether the parents had been aware of the disease and if they had been, why hadn’t the child been treated. If the parents should be found to have known the HIV-positive diagnosis, it may lead to criminal charges.
The Tallinn Children’s Hospital refused to comment on the case.
“This is a very complicated and regrettable case I cannot comment on as a doctor,” said Ülle Einberg, president of the Estonian Association of Paediatricians, who is well informed of the case.
“I want to emphasize that every child suffering of a chronic disease should undergo regular medical checkups. Instructions for treatment and monitoring have been drafted for a number of diseases. Close cooperation between the family physician and the specialized physician, regular communication and mutual understanding are vital components of the treatment process,” she said.
Kai Zilmer, head of the West Tallinn Central Hospital clinic of infectious diseases, said that to their knowledge, 55 children have received HIV from their mothers. The clinic’s doctors are also aware of the case.
“The HIV positive, including children, see the doctors according to necessity, usually at least twice per year. The health records move between the medics and systems according to regular practice, but due to the stigma related to the diagnosis, many patients (including parents of children) do not wish to make it public,” she said.
Nadezhda Leosk, head of the Social Insurance Board child protection and foster parenting section, said that monitoring is not pursued after adoption. It is enough that adoption is preceded by detailed assessment of the families, their preparation and support.
“It is not about adoption, but the child’s need for help and noticing it in time. Adoption is a legal act, which establishes the rights and obligations of a parent and a child between the stepchild and the foster parent. Therefore in case of an adopted child it is about a regular family with a regular child where we cannot expect that the family cannot manage or should be monitored by the child protection service,” she said.
Leosk assured that a family willing to adopt a child is always provided with all existing information about the child’s health. Additional checkups are made if necessary.
“A child with a chronic disease obviously needs medical help and the aggravation of any disease must be prevented,” she said.
However, the parents bear the main responsibility. “If the parent does not observe the doctor’s orders and the child’s health deteriorates, this is a case of a child needing help in the sense if the Child Protection Act,” Leosk explained.
The 2016 Child Protection Act explains that reporting a child needing help is everybody’s obligation and a report should be immediately relayed to the municipal authorities or the children’s protection hotline 11 6111. This means that the medics should also inform the local government of a child with chronic conditions if the latter does not attend regular checkups. In the specific case it is still being studied whether anybody knew about the child’s HIV-positive diagnosis.
Foster parents in Estonia are represented by the NGO Oma Pere; its head Inna Klaos only heard about the tragic case from the reporter. “If the foster parent opens up to us and tells us about the problems with the child’s health or behaviour, we can instruct them. For example, we know of a case, where a child had hepatitis C, received treatment and is all right. If the foster parent hides something, we cannot help,” she said and added that they have contacts with some 200 foster parents.
“People quite often adopt a child and drop off the radar. I believe that every foster family should keep in touch with officials or Oma Pere for at least two years,” Klaos said; she is also a foster parent. According to the NGO’s executive, on the one hand it is good that a foster child is treated as natural offspring after adoption, but on the other hand the adoptive parents may need more support and in some cases also supervision.
“Parents may undergo an assessment before adoption, but after the child joins the family, their life changed 100 percent. The child’s background is not that well known. This is not the same child you have born for nine months”, Klaos said. Oma Pere organizes group consultations and mentoring.
“Those interested make use of the opportunities, but we do not even know about those who are not interested;” she said, but added that the foster parents are immediately informed of a child’s diseases. She is aware of two adopted children who receive HIV treatment.
According to the National Institute of Health Development records, the latest case of a child dying of AIDS was in 2015 (last year’s data have not yet been entered in the register). A child in the age of 5-9 years died in 2015, in 2008 a child died of HIV before the first birthday and in 2007 a child died in the age of 15-19 years.
A total of 219 new HIV cases were diagnosed in Estonia last year, women amounting to 33 percent. There were two infected people in the 15-19-years age range and no younger ones.
In 2016, HIV was diagnosed in three youths between 15 and 19 years, in 2015 in one child in the range of 5-9 years and among five youths between 15 and 19 years.
The most cases of HIV among youths were diagnosed in 2001, when 528 youths between 15 and 19 years were infected, 31 children between 10-14 years and three newborns.
In 2000-2017, HIV was diagnosed in 49 children between 0 and4 years, in four children between 5 and 9 years, 63 children in the 10-14 age range and in 1,668 youths between 15 and 19 years of age.
There were no cases in the last three years of a mother infecting a child.
Tõnu Poopuu, board member of the Estonian Union of Child Welfare
It is tragic to hear that a young life has been lost to a disease presently considered mainly as chronic and controllable by treatment.
A child’s health should be monitored by specialists, starting from first-level medical help – regular confidential contacts with the family physician. A schoolchild is also regularly monitored by the school nurses. Information entered by physicians earlier can be accessed in the e-health system.
Thus it looks as if the child’s right to receive the best possible medical case as stipulated by the UN Convention on children’s rights is assured. But what we often lack is the ability to notice and the courage to intervene. Since the parenting skills and ability to handle problems differ, specialists can help parents in adopting and handling their responsibility as parents. All health care workers are also legally obliged when noticing a parent incapable of bringing up the child to inform the local child protection official.
The Union of Child Welfare has emphasized earlier that the welfare of a child requires cooperation, not just between the parents but among all adults in contact with the child – teachers, parents of classmates, the school nurse, the neighbour, the family physician and even the local shop assistant. Not pro forma or in order to check the boxes in documents – every adult should really observe and report a child in need of assistance.
Where? The child welfare hotline 11 6111.
Every specialist dealing with children should dare seize the responsibility, look beyond their professional competence and contact other specialists who can protect the child’s interests. Only by networking throughout the society we can protect the interests of those children, whose parents for some reason cannot or would not do it.
Refusing blood transfusion created a precedent
The best-known case in Estonia of a child dying due to lack of treatment took place some twenty years ago, when Jehovah’s Witnesses refused a blood transfusion to their baby with a rhesus conflict, resulting in the child’s death three days later. The parents received criminal charges but were acquitted in court.
The tragic story of Viktoria and Nikolay Melnichenko was one of the main court news in 2001. Their daughter born on July 4, 1997, had a rhesus conflict and her life could have been changed by a simple medical procedure of exchanging her blood.
The religious parents did not permit the blood transfusion to be carried out, justifying it with their faith. The child died in the hospitals three days later. The Northern district prosecutor’s office charged the couple with causing death through negligence.
The Melnichenkos argued that their daughter died of a severe health problem rather than a failure to carry out blood transfusion. “The Jehovah’s Witnesses belie that blood is sacred to God,” PR man Tanel Kaljulaid explained their position. “The Bible commands to avoid blood. Jehovah’s Witnesses agree with 99.9 percent of medical procedures and seek for the best assistance. Allogeneic blood is the only thing they reject.”
The then prosecutor Margus Kurm relied in court on the experts’ position that change of blood would have cured the child. Although the law could have enabled sentencing the Melnichenkos up to three years in prison, the prosecutor requested placing then in trusteeship instead of a prison sentence.
The Tallinn City Court (presently Harju County Court) acquitted the Melnichenkos in 2001due to absence of crime and the prosecutor did not appeal.
The outcome of the case was the legalization of the medics’ obligation to provide vital medical assistance to children despite the parents’ opposition. Starting from 2010 a law exists enabling a physician operate as a special trustee of a child in the interests of its health during some procedures; the medic’s decision overrules the opinion of the child’s biological parents regarding these procedures.