ABU DHABI // Sumiya Bousfie was advised a year ago to terminate her pregnancy in its fourth month after doctors told her that her baby would be born with spina bifada. She refused, and stormed out of her obstetrician's clinic.
Mrs Bousfie says she was devastated. She broke down at the thought of her child suffering for the rest of his life. But when she felt him kick in her womb, she could not consider a termination.
"I went to Corniche Hospital instead. They refused to agree with my old doctor that my son cannot survive. Instead, they said there is hope," said Mrs Bousfie, 30, from Morocco.
Two Abu Dhabi Health Services facilities in the capital launched a monthly foetal neurology clinic last summer, to monitor high-risk pregnancies and provide a glimmer of hope for expectant mothers whose babies would be born with a neurological condition.
The Corniche Hospital's foetal medicine unit and the Sheikh Khalifa Medical City (SKMC) neurosurgery and neonatology departments provide counselling, labour management and postnatal care for expectant mothers when a neurological abnormality is confirmed.
The most common of these abnormalities, said Dr Gowri Ramanathan, an obstetrician and foetal medicine specialist at Corniche Hospital, is spina bifada, in which the spinal cord protrudes through a defect in vertebrae that are not fully formed. It occurs once in every 1,000 births, and in 99 per cent of cases can be detected with no more than a detailed ultrasound.
"The introduction of this clinic enables management to start for the baby while the pregnancy is still progressing," she said.
Dr Ramanathan and Dr Dominic Venne, the head of neurosurgery at SKMC, dedicate one day a month to see their patients. With up to 10,000 births a year at Corniche, that has translated to eight patients since the clinic's launch last year.
The collaboration between the two hospitals means that as soon as babies are born, they are transported immediately to Dr Venne's operating table at SKMC. His role is to save their lives, and improve their quality of life in the future.
"Babies requiring neurosurgery will be scheduled for urgent procedures at SKMC even before birth," said Dr Venne.
For Mrs Bousfie, the clinic's very first patient, this meant that when her son, Zayed, was born on April 20, she did not get to see him until a week had passed.
"I was recovering from my Caesarean, and Zayed was taken straight to SKMC so that Dr Venne could close the hole in his spine," she said.
"Dr Venne told me that my Zayed was doing incredibly well, the surgery was successful and they just had to monitor him to make sure none of the spinal fluid is exerting pressure on the brain, after the hole was closed."
Today, Zayed is a healthy nine-month-old baby devoted to his older sister, four-year-old Hiba.
"He laughs so much, and is growing so well; no one can ever tell there is anything wrong with him, not even when I took him to a paediatrician in Morocco," Mrs Bousfie said.
Doctors predict that Zayed will have no problems walking; he moves his limbs with confidence, and his growth rate is average for his age.
"Thank God, my beautiful baby boy, thank God I did not listen to anyone and end my pregnancy. Everything worked out despite those long months when all I did every day was cry and pray that he would be born all right," Mrs Bousfie said.
Although it may be too early to tell how Zayed's future will develop, Dr Ramanathan says the prognosis is excellent.
"The earlier the surgery is done, the better the outlook for the baby," she said. Early surgery limits the chance of infection, and prevents too much handling of exposed tissue.
Corniche Hospital launched a preconception care programme this year, aimed at newly married women.
"If we can get women of childbearing age to take daily folic acid supplements two months prior to conceiving, then we prevent spina bifida in up to 75 per cent of patients," Dr Ramanathan said.
Mrs Bousfie said she did not know until it was too late that taking folic acid before her pregnancy could have prevented Zayed's spina bifida.
"I didn't find out I was pregnant until one month into pregnancy; that's when I started the supplements, but that was wrong," she said.
"I did some things wrong, but there is one thing I definitely did right. When that doctor told me that I am too young to be burdened by a sick baby and that I should end my pregnancy, I walked out.
"That was right."
Abortion and the law in the UAE
According to UAE law, it is a crime for a woman to abort her pregnancy, with two exceptions: if the pregnancy endangers the mother's life or if there is evidence that the baby will be born with fatal deformities and will not survive.
In the latter case, the foetus must be aborted before it is 120 days old, which is during the 17th week of the pregnancy and one week into the second trimester. The abortion must also be approved by a medical panel.
Islamic scholars differ in their stance on abortion, depending on their interpretation of Sharia. They all agree that abortion is forbidden and a sin, even if the pregnancy is a result of rape.
Scholars agree that an abortion may be performed when there is extreme medical need, such as when the mother's life is in danger; they differ, however, on how far into a pregnancy an abortion can be performed.
The majority of scholars say the proedure cannot take place after the foetus is 120 days old; many cite a hadith by Prophet Mohammed that says a foetus acquires life - when "spirit or soul is blown into the foetus" - at 120 days. Others say abortion is forbidden under any circumstances after a foetus is 42 days old.
"The law in the UAE is very strict and very clear on when you can and cannot terminate a pregnancy," said Dr Gowri Ramanathan, an obstetrician and foetal medicine specialist at Corniche Hospital in Abu Dhabi. "Spina bifada is not a condition, according to UAE law, where you would be able to pursue the option of termination."
Studies have shown that many people with spina bifada receive good prognoses for a healthy life - more than 90 per cent of patients live past their third decade.
Other defects discovered during pregnancy, such as Down Syndrome, a limb deformity or hydroencephalitis, a condition in which fluid builds up around the brain, all offer a chance of survival for the baby and do not justify an abortion under UAE law.
Only with cases in which doctors are 100 per cent certain - before the 120-day deadline - that the baby will not survive, does abortion become an option, said Dr Ramanathan.
* Hala Khalaf and Hassan Hassan