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Health and law: When you are carrying a disabled child

With the advancement in medical technology, many researchers are trying to find ways to prevent a number of birth defects. PHOTO | COURTESY

What you need to know:

  • The Ugandan law strongly disregards abortion, which is clearly stipulated in Article 22 clause 2 of the constitution. However, as technology advances, there are chances of parents knowing that their unborn child is disabled and might suffer the rest of their life on earth. We explore what options such parents might have.

A birth defect is a health problem that is present when a baby is born. The defects range from mild to life-threatening and limiting. The risk for birth defects varies by type of defect, family health history and age of the parents, among other factors. Some birth defects have no cure but such children can often be treated to help reduce the symptoms.

With the advancement 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 giving birth 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 a computed tomography scan (CT) scan, blood tests or amniotic fluid include Gastroschisis where the baby’s intestines are found outside of the baby’s body, exiting through a hole beside the belly button.

Chromosomal defects such as Edward’s and Down Syndrome can be detected through blood tests with samples taken from the mother. These tests according to May-Lyton Namata, a laboratory technologist at Sinux Labs, must be done between 12 to 20 weeks of pregnancy and they usually cost between Shs250,000 to Shs350,000. 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 an anal pathway can also be detected

According to Elisha Atuhairwe, a radiographer at Remnant Diagnostic Centre, one needs multiple tests to confirm a disability. In some incidents, the child has more than one disability.

“If the foetus has no brain or a part of the brain is missing or completely has no head, we usually advise the mother to terminate the pregnancy. For other abnormalities, the doctor may recommend an abortion depending on how severe the problem is and if it would be treatable,” he says.

 Personal experiences 

About 32 years ago, after an ultra-sound, Jane Francis Mutesi found out her unborn baby had not developed limbs at 20 weeks. Just like her husband, she was terrified at the thought of giving birth to a physically challenged child.

The couple rejected the option given by the doctors to terminate the unborn life, as they regarded it as murder. “We were considered as a highly religious household and we treasured our faith as opposed to the fears we had raising our child,” she says.

To overcome her worries on balancing quality care for a disabled child and a busy work schedule, Mutesi resorted to hiring a professional caretaker to assist her while she was away.

“I decided to get help from professionals which was costly over the years until my son succumbed to cerebral malaria and passed on shortly after,” she shares.

Unlike Mutesi, Gorreti Bwanika made an informed decision 25 years ago to terminate her pregnancy. With consent from her husband, she agreed that the pregnancy be terminated because of the financial impact and trauma they would face seeing their baby undergoing multiple surgeries.  When she returned home, she told her family that she had lost the baby.

“I was advised by the health worker during my antenatal visits that my unborn child had no chance of living a healthy life as its heart had abnormalities. I had no choice but to painfully comply with the clinical procedure and terminate the pregnancy,” she recalls. 

What the law says

The Ugandan law strongly disregards abortion, which is clearly stipulated in Article 22 clause 2 of the constitution of the republic of Uganda according to Patrick Nasimanya, a lawyer from Paul Byaruhanga Advocates. However, if a mother is a victim of rape, sexual violence, incest or has a pre-existing conditions such as HIV or cervical cancer, one is given the right to seek an abortion, clinically termed as a miscarriage.

 ‘‘No person has the right to terminate the life of an unborn child except as may be authorised by law,’  he stresses.

Uganda’s Penal Code states in Section 141: “Any person who, with intent to procure the miscarriage of a woman whether she is or is not with child, unlawfully administers to her or causes her to take any poison or other noxious thing, or uses any force of any kind, or uses any other means, commits a felony and is liable to imprisonment for fourteen years.”

“Nonetheless,” Nasimanya says, “it must be noted that Section 217 of the Code provides that a person is not criminally responsible for performing in good faith and with reasonable care and skill a surgical operation upon an unborn child for the preservation of the mother’s life.’’

In addition, Section 205 of the Code provides that no person shall be guilty of the offence of causing by willful act a child to die before it has an independent existence from its mother if the act was carried out in good faith for the purpose of preserving the mother’s life.

He says, “The law is based on the argument about the mother’s health. There is no specific clause of the child’s state of disability but lawyers argue citing from that code, such a child can hurt the mother’s mental state of health. Both physical and mental harm to mother is the argument and so it is legally clinically accepted to carry on miscarriage.”

Religious stand

Evangelist Testimony Nsubuga of Hope Alive Ministries dismisses all justified grounds to carry out abortion which he says is clearly against the will of God as written in the Ten Commandments. He recognises the social ridicule and neglect from spouses that consider this as a curse and encourages couples to stay supportive of each other and the children with disability.

“Disability among children born this way can be a trial for the parents and how they handle it counts. Victims need to pray for their unborn children and also receive them with acceptance and love no matter their disability,” he adds.

What to do

Bwanika remarks that, “One ought to have enough funds to take care of a disabled child and the thought of living with it for long, together with the social ridicule behind traditional views can cause mental torture to the mother.”

It is also important to note that some disabilities can appear much later after the child is born and whether you found out before or after giving birth, you need to 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 healthcare provider.

● Your child’s care team will depend on your baby’s condition and usually, it is a multidisciplinary team.

● Tell others of your baby’s condition to minimise stigma and work with your child’s healthcare provider to create a treatment plan.

Folic acid

Dr Denise Ssozi, a gynaecologist at Life Link Hospital in Namugongo, discredits the myths that family planning causes foetal development distress and urges expectant mothers to take folic acid and do regular follow up scans as advised by their physicians during antenatal visits.

These scans, she explains, enable a mother to identify abnormalities earlier so that she can make an informed decision.

Carrying a full term pregnancy of a child with disability should be considerate of whether both parents are physically and mentally ready to continue with the pregnancy.