In a court in Kars, Türkiye, on August 20, the judge found a family who refused to get their baby heel-pricked right based on the words of a person performing “alternative medicine”, sparking controversy among the medical community.
As parents of a newborn child strictly refused to have the heel blood taken from their baby, which is a procedure that is commonly used to detect diseases including phenylketonuria, congenital hypothyroidism, cystic fibrosis, and biotinidase deficiency, Kars Provincial Health Directorate sued the parents, taking the matter to court and demanding that health measures be taken for the child.
However, Kars Family Court decided in favor of the family and declined Provincial Health Directorate’s request, stating "The positive effects of taking heel blood on the child's right to life and health, which the Constitution protects, have not been proven by medical authorities, and a possible diagnosis and treatment are still controversial among medical authorities." as a reason. Furthermore, the judge (MK) mentioned that “the heel lance is one of the biggest evilness that can be done to children”, referring to an alternative medicine expert, importantly not a medical doctor, Aidin Salih’s words in his verdict on August 20, 2024.
Thereupon, the Turkish Ministry of Health objected to the judge's decision, stating that "After [they] consider the aforementioned decision, which is of first instance decision and not constitute a final verdict, to be erroneous, our Ministry has urgently initiated the appeal process against this decision.” The Ministry also remarked that the Newborn Screening Programme will continue without modifications until the judicial process is completed since they fully believe in the upcoming decision based on law, justice, and truth.
Turkish Medical Association (TTB) made a significant written announcement regarding the issue by highlighting that the decision will not only lead to an increase in preventable mental retardations but also will pave the way for families to make arbitrary decisions about their children, potentially refusing the diagnosis and treatment of children in case of many diseases and putting children’s health in risk.
Notably, Türkiye’s Republican People's Party’s (CHP) vice president Zeliha Aksaz Şahbaz filed a criminal complaint to the Council of Judges and Prosecutors (HSK) against the judge of Kars Family Court who agreed with the family’s rejection of heel prick. Şahbaz further stressed that the Ministry of Health already has a Newborn Screening Programme including heel prick applied to all children regularly and that the verdict of the judge contradicts not only the best interest of the children but also decisions made by courts to this day, present procedures developed by Ministry of Health, particularly “Newborn Screening Programme”, and mostly conflicts with the science of medicine since the judge bases his decisions on claims of “alternative medicine expert”. Şahbaz remarked that there is no such thing as alternative medicine and that medicine is the main reason why people and societies maintain their lives healthily. Therefore, she explained that they made a denunciation against the judge and his problematic verdict.
What is a newborn blood spot test/ heel prick test?
Newborn blood spot screening, also known as heel prick test, involves taking a blood sample from the heel of the baby, ideally when they are 5 days old. The test checks for 9 rare but serious diseases such as sickle cell disease, cystic fibrosis, congenital hypothyroidism, inherited metabolic diseases including phenylketonuria (PKU), medium-chain acyl-CoA dehydrogenase deficiency (MCADD), maple syrup urine disease (MSUD), isovaleric acidaemia (IVA), glutaric aciduria type 1 (GA1), homocystinuria (pyridoxine unresponsive) (HCU), and Severe combined immunodeficiency (SCID), and spinal Muscular Atrophy (SMA). Contrary to popular belief, the test does not carry any risks for the baby.
As Head of the Nutrition and Metabolism Department, Hacettepe University Children's Hospital, Professor Doctor Ayşegül Tokatlı stated in an interview given to BBC Türkiye, that heel pricking does not harm the baby, and mentioned the fact that in the first month, is hard for to take blood from the baby’s finger, therefore heel is preferred. She stressed that if parents do not consent to have their babies blood drawn, hundreds, thousands of babies will suffer from these diseases because their parents neglected the early diagnosis option. Tokatlı added that some of these diseases can even lead to death, and babies can die from diseases that can be treated effectively with early diagnosis, and those who survive can become disabled. Tokatlı underscores that almost 1 in 4 marriages in Türkiye happens between relatives, with cousin-to-cousin marriages taking the lead, which makes the heel prick test even more essential since the risk of hereditary diseases is really high. She remarked that the first and foremost aim is to diagnose children with the blood spot test and initiate their treatment promptly, while the long-term goal remains decreasing and preventing kin marriages in order to establish a healthy society, with minimized genetic diseases.
Similarly, the head of TTB, Prof. Dr. Alpay Azap defined the blood spot test as a process that yields invaluable information to doctors and can protect babies from serious illness and death. Azap stressed the importance of the heel prick test, especially in the diagnosis of phenylketonuria, PKU, an inherited disorder through a genetic mutation that causes a build-up of an amino acid called phenylalanine in the body.
The disease is passed on to the children in case both parents carry the modified gene, hence consanguineous marriage becomes a significant risk factor.
Since there is no cure for the disease, early diagnosis gains more importance in order to reduce the severity of the symptoms. Newborn screening successfully identifies PKU as the primary diagnostics method, demonstrating the undeniable benefits of the heel prick test once again.
President of PKU Family Association Deniz Yılmaz Atakay, said to BBC Türkiye that early diagnosis of PKU with heel prick test saved her daughter’s life and stopped her from developing mental disability thanks to effective treatment and diet. Atakay emphasized PKU diagnosis within a maximum of 5-10 days, which is 20 days in Türkiye on average, with lifelong treatment and a special, low-protein diet, they can be very healthy and competent individuals.
According to the PKU Family Association, 1 in 20-25 people carries PKU in Türkiye. Türkiye appears as a highly prevalent country worldwide in most of the studies and even ranks first in some graphics, which correlates with the high rates of consanguineous marriage in Türkiye.
Thus, the heel prick test becomes even more important and necessary in a country like Türkiye having high rates of genetic disorders such as PKU, and consanguineous marriage. As Dr. Azap addresses, “Unfortunately, families are getting influenced by some communities and people making unscientific suggestions. This is also the case in Kars, where people were made to think heel prick is a harmful practice”, adding that instead of scientific evidence, superstitions, and groundless beliefs are widely accepted in society. Azap stated that they, as the Turkish Medical Association, are also planning to file a criminal complaint against the judge who issued the controversial decision in Kars, noting that they will continue their fight against this situation that threatens public health.
The key takeaway is simple: heel prick test that allows early diagnosis is life-saving. Additionally, baseless decisions that conflict with science and jeopardize public health regarding the current issue or else should never be tolerated.
