Health and Rights: When Carrying a Disabled Child
A congenital anomaly is a health problem present when a baby is born. Faults range from mild to life-threatening and limiting. The risk of birth defects varies depending on the type of defect, family medical history, and parental age, among other factors. Some birth defects are incurable, but these children can often be treated to help reduce symptoms.
With advances in medical technology, many researchers are trying to find ways to prevent a number of birth defects. However, not all birth defects can be prevented. While some mothers only find out after childbirth that their children have a disability, some are able to detect it before birth.
Some of the conditions that can be detected before a child is born using computed tomography (CT), blood or amniotic fluid tests include gastroschisis where the baby’s intestines lie outside the body of the baby. baby, coming out through a hole next to the navel. .
Chromosomal defects such as Edward’s disease and Down’s syndrome can be detected by blood tests with samples taken from the mother. According to May-Lyton Namata, laboratory technologist at Sinux Labs, these tests should be done between 12 and 20 weeks of pregnancy and usually cost between 250,000 and 350,000 Shs. She adds that beyond this time, the methods would be invasive and likely to affect the unborn baby.
Neural tube defects such as spina bifida, anencephaly and encephalocele, irregular (zigzag) spine, short limbs or complete absence of limbs and absence of anal passage can also be detected
According to Elisha Atuhairwe, a radiographer at the Remnant Diagnostic Center, it takes several tests to confirm a disability. In some incidents, the child has more than one disability.
“If the fetus has no brain or part of the brain is missing or has no head at all, we usually advise the mother to terminate the pregnancy. For other abnormalities, the doctor may recommend a abortion depending on the severity of the problem and whether it is treatable,” he says.
About 32 years ago, after an ultrasound, Jane Francis Mutesi discovered that her unborn baby had not developed limbs at 20 weeks. Like her husband, she was terrified of giving birth to a physically handicapped child.
The couple rejected the option given by doctors to terminate the unborn life, as they considered it murder. “We were considered a very religious household and cherished our faith as opposed to the fears we had raising our child,” she says.
To overcome her concerns about balancing quality care for a disabled child with a busy work schedule, Mutesi resorted to hiring a professional caretaker to assist her while she was away.
“I decided to seek professional help, which was costly over the years until my son succumbed to cerebral malaria and died shortly thereafter,” she shares.
Unlike Mutesi, Gorreti Bwanika made an informed decision 25 years ago to terminate her pregnancy. With her husband’s consent, she agreed to have the pregnancy terminated due to the financial impact and trauma they would face seeing their baby undergo multiple surgeries. When she returned home, she told her family that she had lost the baby.
“During my antenatal visits, the health worker informed me that my unborn child had no chance of leading a healthy life because his heart had abnormalities. I had no choice but to painfully comply with the clinical procedure and terminate the pregnancy,” she recalls.
Ugandan law largely ignores abortion, which is clearly stipulated in article 22 clause 2 of the constitution of the republic of Uganda according to Patrick Nasimanya, a lawyer with Paul Byaruhanga Advocates. However, if a mother is a victim of rape, sexual violence, incest, or has pre-existing conditions such as HIV or cervical cancer, one has the right to seek an abortion, clinically termed as a miscarriage. .
”No one has the right to end the life of an unborn child, except as permitted by law,” he stresses.
The Uganda Penal Code states in Section 141: “Any person who, with intent to induce the miscarriage of a woman, whether pregnant or not, unlawfully administers to her or causes her to take poison or any other harm, or use any force of any kind, or use any other means, commits a felony and is liable to imprisonment for fourteen years.
“Nevertheless,” says Nasimanya, “it should be noted that Section 217 of the Code provides that a person is not criminally liable for performing in good faith and with reasonable care and skill a surgical operation on a unborn child for the preservation of mother’s life.”
In addition, article 205 of the Code provides that no one can be guilty of the offense of having caused by a voluntary act the death of a child before he has an existence independent of his mother if the act has was done in good faith to preserve the life of the mother.
He says, “The law is based on the argument of the health of the mother. There is no specific clause on the state of disability of the child, but the lawyers claim, citing this code, that such a child can harm the state of mental health of the mother. Physical and mental harm to the mother is the argument and therefore it is legally clinically accepted to have a miscarriage.
Testimony of Evangelist Nsubuga of Hope Alive Ministries rejects all justified grounds for performing abortion, which he says is clearly against God’s will as stated in the Ten Commandments. It acknowledges the social ridicule and neglect of spouses who view it as a curse and encourages couples to support each other and children with disabilities.
“Disability in children born this way can be a hardship for parents and how they deal with it matters. Victims should pray for their unborn children and receive them with acceptance and love, regardless of their disability,” he adds.
Bwanika points out that “One must have enough money to care for a disabled child and the idea of living with him for a long time, as well as the social ridicule behind traditional views, can cause mental torture to the mother. “
It is also important to note that some disabilities may appear much later after the child is born and whether you discovered it before or after childbirth, you must accept, love and care for your child.
● If you have a child with a disability, it is important that you keep all appointments with your baby’s health care provider.
● Your child’s care team will depend on your baby’s condition and is usually a multidisciplinary team.
● Tell others about your baby’s condition to minimize stigma and work with your child’s health care provider to create a treatment plan.
Dr. Denise Ssozi, gynecologist at Life Link Hospital in Namugongo, discredits myths that family planning causes fetal developmental disorders and urges pregnant women to take folic acid and have regular follow-up tests, as advised by their doctors during prenatal visits.
These scans, she explains, allow a mother to identify abnormalities earlier so she can make an informed decision.
Carrying a pregnancy of a disabled child to term must take into account that both parents are physically and mentally ready to continue the pregnancy.