The Murcian Health Service (SMS) will have to compensate parents with 335,000 euros who were not informed in La Arrixaca about the risk of genetic disease in the fetus that arose from various findings detected during pregnancy. This high probability “obliged the medical service to inform the parents so that they could state if they wished to choose to terminate the pregnancy,” says the Administrative Litigation Chamber of the TSJ in a ruling made public this Friday by the Patient Advocate Association. Finally, the child was diagnosed, after birth, with Beckwith-Wiedermann syndrome, a growth disorder that can affect various parts of the body.
The Patient Defender Association underlines the importance of this sentence, against which an appeal is possible. “Some parents were deprived of their right to legal termination of pregnancy,” denounces the organization. The lawyer Ignacio Martínez, who has represented the family, warns that “there are more similar cases that are still ‘sub judice’ (pending trial), and that point to an alleged abnormal operation in the service” in charge of monitoring the risk pregnancies in La Arrixaca. That is, in the Fetal Pathology Unit.
In the sentence, the TSJ makes it clear that the mother can benefit from the abortion law after week 14 if there is a risk of serious anomalies in the fetus, even if these malformations or genetic diseases have not been confirmed in the tests carried out. In this case, the doctors detected several anomalies that were not serious and that by themselves did not justify, in principle, the voluntary interruption of the pregnancy. However, “as a whole” they did imply “signs or indicators of a risk of serious pathology, Beckwith-Wiedermann syndrome, as stated in the different medical reports.” «These findings should have guided the presumed diagnosis of some genetic disease whose scope was impossible to foresee -as indeed happened-, which forced the medical service to notify the parents so that they could state if they wished to choose to terminate the pregnancy, especially in a case in which there were already several pregnancies with problems, “says the TSJ in its sentence. “There is no record that this information was given,” the court concludes.
Specifically, the doctors detected, at week 15, an omphalocele (a defect in the abdominal wall that leads to the intestines or other abdominal organs coming out through the navel). This problem was solved without problems after the birth. Parents were also informed, at week 15, of the presence of a single umbilical artery (SAU). This also did not initially pose a serious complication. But “it was a half-truth,” denounces the Patient Advocate Association, because these findings “are statistically associated with a high risk of serious anomalies in the fetus that cannot be diagnosed during pregnancy, and that is not the case.” He said nothing to the parents,” laments the organization.
The SMS insisted during the case on the lightness of the problems detected, but the TSJ settles this argument by warning that “it is irrelevant whether the malformations verified by ultrasound before week 22 were or not of importance for the voluntary interruption of the pregnancy , because it does seem to be a disease that is susceptible to causing serious malformations, complications and different pathologies or, at least, the parents should be aware of the real possibility that their child suffered from it and choose, where appropriate, to terminate the pregnancy ».
Health defends that “all established protocols were respected”
As of week 14, the law establishes that the pregnancy may be terminated for medical reasons when “22 weeks of gestation are not exceeded and provided there is a risk of serious anomalies in the fetus and this is stated in an opinion issued prior to the intervention by two specialist doctors other than the one who performs or directs it”.
The explanation of the hospital
The reading of the sentence allows us to verify what is the explanation that La Arrixaca transferred to the judge. The medical officer in charge of the Maternal Fetal Unit issued a report explaining that, after detecting the omphalocele and the single umbilical artery, the patient was offered a chorionic biopsy to rule out possible chromosomal abnormalities. The woman initially rejected it and “a free circulating DNA test in maternal blood” was carried out “at her expense”, a test that the regional public health system still does not cover despite the fact that it is already introduced in the vast majority of autonomous communities. The test result “was normal,” this report states. Later, the patient “called by phone to say that the invasive test would not be done, but that she was going to abort directly, but since she was pregnant for more than 14 weeks, she was out of term to abort without a diagnosis of malformation by two specialists. Since she could not abort due to the Time Limits Law, the patient decided to undergo the invasive test, “says the doctor. No abnormalities were detected, she notes.
Regarding Beckwith-Wiedermann syndrome, and “despite the identification of the genetic basis of his disease, it is not possible to apply this epigenetic finding to prenatal or preimplantation diagnosis,” he explains.
The Patient Association denounces that all this explanation collides with the letter of the Abortion Law. “The key to the case is that the parents were deprived of their right to a legal termination of pregnancy in accordance with the law, which does not require, as the defendant claimed in the trial, that before the 22nd week of gestation, prenatally diagnose serious anomalies -of course the omphalocele and the single umbilical artery were not-, but the risk of serious anomalies, which in this case was clear and in fact ended up materializing with a syndrome that, fortunately in the case of the son of these parents, it has not affected their mental capacity, but above all motor problems. This limited impact, with a slight disability, has determined that the compensation imposed by the TSJ is not greater.
The mother also had another factor that made her experience the whole process with special anguish: she had previously gone through several spontaneous abortions, one of them after a conjoined twin pregnancy. During the final phase of pregnancy, a possible right renal agenesis (absence of development of the right kidney) was also detected, although this problem was not finally confirmed.
“All the tests were done”
The Ministry of Health showed its “respect” for the sentence this Friday, but defended that “in this case all the established protocols were respected, all the complementary tests were done to the control ultrasounds (genetic studies, chorionic biopsy, etc. ) without finding signs of fetal disease, or any type of pathology in the fetus that would imply disability”.
The eternal controversy of abortion in the Region
Access to abortion has been the subject of a succession of controversies in the Region of Murcia for decades. Until 2021, women who interrupted their pregnancy for medical reasons after week 22 were referred outside the community, which generated numerous complaints that ended up jumping to national political news thanks to the ‘Salvados’ program. The SMS then changed the protocols and announced that La Arrixaca would assume these interventions. Last year a new agreement was signed with the concerted clinics that maintains the referral of all abortions until week 14, but introduces some changes. The Arrixaca already assumes, if the patient wishes, the last phase of the process (dilation and expulsion) from week 20, but the initial phase -the technique that ends fetal viability- continues to be carried out always in concerted centers. Professionals from La Arrixaca admitted to LA VERDAD that this protocol was expressly designed at the hospital itself to conform to the moral vision of abortion on the part of the staff. “The procedure to stop the heart of the fetus is carried out outside, in concerted centers, so that when the patient arrives at La Arrixaca, the gynecologists are limited to proceeding with the expulsion,” summarized a health worker. The reform of the Abortion Law puts an end to conscientious objections ‘en bloc’, that is, from an entire service, something that the Murcian Health Service has used for years to avoid assuming these interventions in public hospitals. Now, professionals must register as objectors, but only 35 doctors had done so until last February. The statistics of the Ministry of Health collect a single abortion in the regional public health in 2021, although the Ministry raises the figure to 9. The PSOE has also charged this year against the actions of the clinical committee of La Arrixaca in charge of authorizing abortions from week 23. In these cases, an extremely serious and incurable disease must be established in the fetus. At least two women traveled to Brussels to undergo an abortion, in one case after the rejection of the committee and in another without yet having an opinion. A clinical committee in Barcelona had also denied the first of the cases.
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