The expectancy of a first child means the world to every parent. It is an indescribable feeling of joy and happiness not just within the concerned family but beyond.
The day of delivery, therefore, couldn’t come any sooner.
So it was for Mr Hassan Funmilayo, a Design-Build Architect and Mrs Aminat Funmilayo, an accountant-turned-online fashion entrepreneur. A lovely couple waiting for the beautiful moment, but things didn’t go according to the childbirth script.
Just months away from the delivery, Mr and Mrs Funmilayo had been attending a prenatal clinic at a private hospital in Lagos where they had been told their expectant baby was okay and doing fine and were expecting a boy according to the scan.
Not satisfied with the outcome, another doctor advised the Funmilayos to register with any general hospital in Lagos and it was at Isolo General Hospital they got what wasn’t expected at all.
“At about eight months of pregnancy an aunt of mine who is a doctor advised we should register my pregnant wife in any Lagos State government general hospital because she believes they are better,” Mr Funmilayo narrated.
“We followed her advice and visited the general hospital In Isolo and a scan was carried out. The scan result was given to the doctor and he immediately rushed out to call his colleague. That was when he now told us there’s something wrong with our expectant baby who happened to be a girl and not a boy as first thought.
“The doctor said the scan shows the baby has Hydrocephalus, which is excess water in the brain. Afterwards, we were sent to another specialist for a confirmatory test, which confirmed the same. We were told it was only Hydrocephalus and my wife won’t be able to deliver the baby normally.”
The baby girl named Samara, an Arabic name meaning ‘protected by God’ was born two weeks after her Hydrocephalus diagnosis only for another big one to follow.
“Exactly two weeks after the shocking news, Samara was delivered through C-S (Caesarean Section) at the General Hospital on the 16th of January 2014. After the delivery, one of the doctors requested to see me privately,” Mr Funmilayo continued.
“It was then she told me apart from the baby been born with Hydrocephalus, she was born with a neural tube defect known as Myelomeningocele [the most severe type of Spina Bifida] and that her spine was ruptured (exposed from birth).”
Hydrocephalus is the excess build-up of Cerebrospinal Fluid in the brain. Continuous build-up of the fluid can cause brain damage thereby hindering cognitive growth and development. Spina Bifida meanwhile is a congenital defect in which a baby’s spinal cord fails to develop properly while still in the womb.
It can lead to serious infections, paralysis of the legs and inability to control bladder and bowel movements. Spina Bifida can also lead to Hydrocephalus.
The only way to prevent further damage from happening to the brain as the child grows is to perform a surgery. For Hydrocephalus, a tube-like device called a Shunt is inserted inside the brain to allow Cerebrospinal Fluid flow freely without obstruction, thereby stopping the abnormal growth of the head.
For Spina Bifida, different types of treatment might be required such as removing the exposed sack at a baby’s back around the spine, use of walking aids for movement, orthopaedic treatment for the weak bones in the body, physiotherapy, plastic surgery and continence management for bladder and bowel movement.
Spina Bifida and Hydrocephalus are life-long conditions with no cure and no specific known causes, even though outcomes such as bleeding within the brain, brain tumours, Meningitis and other infections during pregnancy can be implicating factors.
While Spina Bifida and Hydrocephalus are more prevalent in children especially at birth, these conditions can also occur in adulthood.
The occurrence of Spina Bifida and Hydrocephalus can be reduced by as much as 70% with women of childbearing capability taking 400 micrograms of folic acid (Vitamin B9) daily or foods rich in folic acid.
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This should be part of a daily lifestyle even when pregnancy is not yet on the agenda. It will help in strengthening the neural tube – which forms the brain and spinal cord, as the baby develops in the womb. They must also avoid misusing drugs and eat a balanced diet while also reporting for an antenatal clinic for proper supervision and monitoring.
In trying to find out the prevalence of Spina Bifida and Hydrocephalus in Nigeria, Dr Edward Komolafe, a Consultant Neurosurgeon at Obafemi Awolowo University Teaching Hospital, Ile-Ife, says it’s not easy to ascertain the numbers due to factors such as many births occurring outside of hospital facilities and also a rejection of prognosis for those who give birth in hospitals.
“It’s difficult to say exactly the prevalence of Hydrocephalus and Spina Bifida or any other congenital lesions in Nigeria because we do not have accurate data,” he explained.
“However, from some publications which are mostly hospital-based, prevalence ranges from 1:1000 to 1:5000 depending on the region.
“Most births are outside the hospitals and then many of these lesions are not brought to the hospital.
“Even those given birth to in the hospital sometimes reject treatment once they are counselled about possible prognosis. However, these lesions are common in our environment and most neurosurgery clinics will see about one to two [cases of Spina Bifida and Hydrocephalus] each clinic day.”
The reality of the Funmilayos’ first child and daughter, Samara, was an extremely bitter pill to swallow. So bitter they believed they were under a spiritual attack, a common theme in Nigerian homes when children are born with anomalies.
To top it all up, they were advised to end the little girl’s life via Euthanasia (mercy killing) before she could feel the world. However, they never had the intention of taking up the option but gave the charming baby a chance to live life to the fullest.
“I was shocked at the news of Hydrocephalus and further devastated after delivery that she also was born with Spina Bifida,” Mr Funmilayo said.
“So, for some weeks I and my wife believed we had been attacked spiritually and asked God who did we offend especially when we were advised by some persons to terminate her through mercy killing.
“After the denial period, we summoned up the courage that we had to do all our best medically to keep the child alive and leave the rest to God.”
It was a brave decision for Mr and Mrs and Funmilayo not to intentionally end Samara’s life, knowing full well it was going to be a life full of medical challenges and obstacles.
According to her father, Samara’s lower limbs were partially paralysed at birth meaning this will hamper her ability to walk. She has a very low sensation from the waist below so she can only move around with the aid of a wheelchair. She is however undergoing continuous physiotherapy to bring some life to her lower limbs.
Due to Spina Bifida, Samara also has continence challenges in voluntarily controlling her bowels and bladder and will therefore need assistance from time to time.
Care of Samara doesn’t come cheap at all. For her HKAFO (Hip, Knee and Foot Orthosis) needed for physiotherapy mobility sessions, it costs about ₦250,000 which needs to be changed every 3-4months as she is growing taller.
Should Samara need a Shunt replacement for her Hydrocephalus which her parents do not pray for even though it is a common neurosurgical procedure, it will cost about ₦1.5 million to ₦2 million to have it done at a private hospital in Lagos.
The saddening part is that health insurance does not cover any of Samara’s conditions, but her parents are not undeterred by the financial burden.
Regardless of these setbacks, Samara has hit some huge developmental milestones which have brought joy to her parents and her community.
She is the only one out of six children in the hospital ward where her surgery was performed at the Lagos State University Teaching Hospital to have enrolled in school. She also did not succumb to Meningitis and other deadly infections that killed three children in the same ward she was in. According to her father, every surgery she has undergone to date from neurosurgery, spine surgery and plastic surgery, has been successful.
Samara is a brilliant and intelligent girl excelling in school with dreams of becoming a doctor to treat people who have similar conditions as hers.
Samara’s father admits it was difficult to get a school that would accept her because they all had a phobia for her condition. However, he found hope when she was accepted at The Outliers School, in Surulere, Lagos, managed by Dr Fatai and Shakirat Olajobi, a medical doctor and child psychologist educator respectively, who also happen to be advocates for inclusive education of children with special needs.
Monsoor Adeniji, Samara’s teacher at the school said it’s been a journey of new discoveries and of course challenges to teaching Samara.
“I have realised that it is not teaching her that matters it is about retaining and reproducing knowledge when needed,” she explains.
“When I first met Samara I had a piece of background knowledge about her abilities, performance and character but subsequently I saw that she could actually do so much more and better if provided with the proper motivation and reinforcements.
“Although now we haven’t still gotten her to her tipping point, my teammates and I have planned to intensify learning and follow up for Samara.”
Ms Adeniji academically rates Samara highly for her age and her condition, citing good performances in subjects like Maths, Grammar and Comprehension, Science and Social Studies. Samara has been able to receive prizes at Spelling Bee competitions and also sports where her cognitive and communication skills are put to the test.
Her teacher goes on to assert that Samara has a flair for Public Speaking and can excel early if groomed properly. She also believes the little girl’s dreams of becoming a doctor are not impossible because she is very observant and quite assertive among her peers.
Despite the gains, Samara is making academically and with life in general, Mr Funmilayo still has some fears about his daughter living with Spina Bifida and Hydrocephalus.
This is due to the fact that living with the condition requires consistent multidisciplinary medical attention and care throughout her entire life span by regularly visiting different medical specialists like the neurosurgeon, urologist, and physiotherapist.
Samara is one out of many children and adults in Nigeria living with Spina Bifida and Hydrocephalus, but many do not have the right information, care and support that will ignite hope rather than fuel fear and extreme measures such as mercy killing.
It’s to this end Samara’s parents have been on an advocacy journey since their daughter’s birth. The challenge of watching Samara stay in hospital for almost five months knowing that she would have spent far less time and better care were she operated abroad was the first push for advocacy.
Also, watching three other babies born with Spina Bifida and Hydrocephalus die due to negligence of the public health system in the same ward which Samara was in 2014 was heartbreaking for her parents. Samara was given just seven days to live, but she’s been living for seven years and counting and it’s been a strength for her parents.
Mr Funmilayo is the acting president of the Spina Bifida and Hydrocephalus Association in Nigeria (SBHAN), a non-governmental organisation that advocates the rights of persons living with Hydrocephalus and Spina Bifida in Nigeria, creating awareness and educating the general public about Spina Bifida and Hydrocephalus. The organisation also seeks to promote the welfare of its members.
Access to quality healthcare for people living with Spina Bifida and Hydrocephalus in Nigeria such as Samara, is often a tall order because of huge problems in the healthcare system, chief of which is doctors constantly going on strike, which is currently happening at the moment.
At times like these, offers to migrate for better paying medical jobs abroad presents itself and these doctors take it, leaving a smaller number of qualified hands back home. Dr. Komolafe also attributes a lack of health insurance coverage that doesn’t even cover any neurosurgery as another reason for limited access. He is of the view that healthcare should be free for children like Samara.
Every October 25 is World Spina Bifida and Hydrocephalus Day and this year, the theme is titled “Unlock Your Right to Health”.
SBHAN, under Mr Funmilayo’s watch, will also be holding a virtual discussion on October 27, 2020 titled: “Bridging the gap between patients/families and health care providers towards improving outcomes” which will bring together medical professionals, Spina Bifida and Hydrocephalus survivors and advocates from all over the world.
Mr Funmilayo’s hopes and expectations from the outcome of discussions on WSBH Day 2021 is firstly, a multi-disciplinary approach and synergy of doctors/healthcare workers in the management of people living with Spina Bifida and Hydrocephalus. Management that will come from neurosurgeons, urologists, plastic surgeons, paediatrics, orthopaedics, physiotherapists, speech therapists and others. This way, persons living with Spina Bifida and Hydrocephalus stand a better chance of living their lives to the fullest.
Mr Funmilayo also wants those living with Spina Bifida and Hydrocephalus to be given priority at all times in any case of emergency, as fatality might occur if untreated within the shortest space of time.
The SBHAN acting-president has benefited immensely from Festus Fajemilo Foundation, a non-governmental organisation dedicated to providing information, services and advocacy in ensuring people living with Spina Bifida and Hydrocephalus have equal rights and access to good healthcare and support in Nigeria.
Samara has received great help from the foundation with regards to her incontinence and bowel control challenges which is made possible by consistent support and update from international partners on all areas of Spina Bifida and Hydrocephalus wellbeing, giving room for Samara to live a normal and happy life as much as possible.
Mr Afolabi Fajemilo, Co-founder and Executive Director of Festus Fajemilo Foundation, which has been in operation since 2006, beyond WSBH Day 2021, wants to see people living with Spina Bifida and Hydrocephalus have equal rights and access to enjoy highest attainable standards of healthcare which is in line with article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). He also wants to see a society devoid of stigmatisation, discrimination and exclusion on the basis of having Spina Bifida and Hydrocephalus.
Had Mr and Mrs Funmilayo taken up the advice of doctors and family and friends to intentionally kill Samara just to eliminate the challenges she will have to face in her life, there wouldn’t have been any basis for writing this article. Well, only maybe to join the debate on whether Euthanasia is ethically and morally right.
However, a piece of positive advice that said: “Do your best for her and leave the rest to God”, was what they took and there are no regrets.
Of course, giving birth to a newborn baby with a ruptured spine and bloated head can be really scary, making one neglect the child, especially in a society filled with negative stereotypes and beliefs towards those living with the condition.
Samara’s progress is however a sign of hope and an inspiration to many that having Spina Bifida and Hydrocephalus is not the end of the road, just like the meaning of her name ‘protected by God’ indicates.
Rather, it is the beginning of what will be an amazing life-like doctor Samara aspires to become. All it takes is the right approach and attitude to care for them.