Down Syndrome – Source Down Syndrome Global Foundation
Sodiq Ojuroungbe
In this report, Sodiq Ojuroungbe writes about the resilience and determination of parents abandoned by their partners to care for children born with congenital abnormalities, emphasising the need for government and society to step up the necessary resources and support systems for nurturing and integration
Congenital abnormalities like Down syndrome, autism, cleft lip and palate, pose serious health issues for children in many communities in Nigeria.
Multiple operations, continuous medical care, and specialised support are frequently needed, as most with such birth defects are constantly plagued by ill health.
Couples occasionally endure difficult paths, but it becomes even more difficult when one partner walks away, leaving the other to care for a child with special needs alone.
Many single parents experience a complex range of emotions as they single-handedly attend to medical demands and the heartbreaking reality of abandonment.
Despite these overwhelming circumstances, beautiful, inspiring stories abound of individuals, who against all odds demonstrated an unbroken spirit and unwavering commitment to their children.
One such parent is Mary (not her real name), a young mother who thought she had found her happily ever after and looked forward to a great future.
She recalled basking in the euphoria of a newlywed, and being pampered by her husband, John, especially for conceiving the same month they exchanged marital vows.
However, the birth of her daughter, Joke, born with a congenital deformity, cut short her honeymoon reverie – her partner left without a goodbye.
Mary told our correspondent that her world turned upside down in 2018.
She recalled that amid the joy of being a new mother after enduring excruciating labour pains for hours, she was shocked to realise that her bundle of joy had legs that were awkwardly twisted.
“I noticed that her tiny foot was smaller than expected as soon as a nurse handed her over to me for breastfeeding,” she recalled.
According to her, the doctor’s words hit her hard when he said my daughter has a congenital deformity, a rare condition that will require multiple surgeries and a lifetime of care.
Mary said her heartbeat increased as she struggled to process the news, while her husband just stood by her side staring at the baby without showing any form of emotion.
According to her, the days that followed were filled with a rollercoaster of emotion and lots of hospital visits, doctor’s appointments, and sleepless nights.
“Instead of offering comfort and support, he became distant and cold. I was struggling to come to terms with my new reality, feeling like my world was crumbling around me.
“And then, the unthinkable happened; John abandoned us. He left me to face the challenges of raising a child with special needs alone,” she said with a sigh.
She recalled being devastated and struggling to care for Joke as the days turned to weeks, and the weeks rolled into months.
For her, navigating the complex medical system and making sense of her new reality was difficult but she was determined to be strong for her daughter.
“It was drowning in a sea of uncertainty, with no lifeline in sight. When I looked into my daughter’s eyes, I knew I had to keep going. I knew I had to be strong, not just for myself, but for her. And so, I fought for my daughter’s rights, needs, and future.
“The journey was not easy, but I refused to give up. I became a warrior, an advocate, and a voice for my child. And while navigating the ups and downs of special needs parenting, I discovered a strength I never knew I had,” she quipped, smiling.
Diagnoses that shatter dreams
Mary’s story is not an isolated one as many have faced similar challenges when abandoned by their partners for having children with congenital deformities.
Funsho (not real name) is another woman whose partner, Alex left when their son was just six months old.
The woman narrated that when she held her son, Michael, in her arms for the first time, she had no idea that their lives were about to change forever.
She recalled that by the time Michael was three months old, they began to notice that he was not reaching developmental milestones like other babies of his age.
Funsho said after several tests and consultations, they were told that Michael had a genetic condition called Down Syndrome.
For her, the news was not what she anticipated and it tore the fabric of her union to shreds.
She explained that when the reality of Michael’s condition set in, Alex found it increasingly difficult to cope with the challenges that lay ahead.
“The diagnosis took an immediate toll on my marriage. The emotional burden became too heavy, and when Michael was just six months old, his father left, never to return.
“I was devastated. Not only was I trying to come to terms with Michael’s diagnosis, but now I had to face the reality of raising him alone. The future felt uncertain and overwhelming,” she told our correspondent.
Despite the heartache and overwhelming challenges, Funsho said she found the strength to forge ahead.
“I knew I had to keep going for my son’s sake. Michael’s resilience and his bright, infectious smile were the driving forces that kept me going. I was determined to give him the best life possible, no matter what obstacles we faced,” Funsho said.
As Michael grew older, his mother researched various therapies and treatments that could help him attain his full potential.
Funsho further told our correspondent that she never relented in her search for therapies and treatments that would enable him to reach his full potential.
Left with cleft lip sons
For Mrs Eunice Omoruyi, her husband did not leave the house, but his presence made no difference as she was left alone to cater for two sons, Anthony and Anthonia, both born with cleft lip and palate deformities.
She described the pain of nurturing the infants, born two years apart, alone as a traumatic path.
Child with cleft palate
While recalling not having any complications during the two pregnancies and no history of such occurrence in her family or that of her husband, she said the shock of the children’s state usually leaves her mother-in-law in tears.
“Anthony was my first child and there was no sign that I could give birth to a child with cleft palate as I didn’t have any complication, neither was it detected during antenatal. To the best of my knowledge, we have not seen anything like that from my family or that of my husband,” she added.
More reported cases
The troubling phenomenon of partners taking the easy way out by walking away, abandoning the other with a child born with a defect, experts say, calls for concern.
In 2015, a middle-aged woman, Mrs Taiwo Sheriffdeen gave birth to a baby boy without arms.
It was reported that the boy was delivered at exactly 2:07 pm at a private hospital, Majotal Medical Clinic, located in the Ilogbo area of Ado-Odo/Ota local government area of Ogun state.
The father, identified as Mudashiru Sheriffdeen, however, took to his heels when informed that his newborn had no arms.
The mother narrated, “This is my first child and I don’t know why I gave birth to this kind of a baby.
“Immediately my husband was informed that his son had a deformity, he ran away and had not come to see us. He is a commercial bus driver, and we had been married now for almost two years before God decided to answer our prayers.
“When I was pregnant, we took every step that the doctor directed us to take, but we didn’t know why we came about this calamity.”
In 2020, PUNCH exclusively reported that an Ilorin-based man, Abdul-Wasiu Omo-Dada, allegedly dumped his blue-eyed wife, Risikat Azeez and two children.
Mother and children with coloured eyes 1
It was learnt that Omo-Dada rejected his wife and two daughters because of the colour of their eyes.
The wife, who said she sees clearly with her eyes regardless of the colour, lamented that her husband, who married her without minding, changed when she gave birth to two kids with blue eyes.
The mother of two, who spoke in Yoruba Language, said, “I was born with these eyes and I also gave birth to my children with the same pair of eyes. Since I was born, I have never had any challenges with my eyes. I have never been to the hospital due to any discomfort. I thank God.
“No one had this set of eyes before me in my family; both from my mother and father’s side. I’m the first to have this kind of eyes. And when I started bearing children, they also have it and I did not regret that I have this set of eyes with my children.”
She further stated, “My husband, Abdul Wasiu Omo-Dada, is very much aware of the condition of my eyes and loves me for who I am. Things started getting bad when I had my first child and later my second child. He changed and would shut me up and walk out on me whenever I tried to start a conversation with him.
“His parents even told him, ‘Will you keep on giving birth to children with this kind of eyes?’ He changed to the extent that he would leave the house for a whole week before coming back home. There was no food and no provision that I had to go to my parents’ place to feed.
“My parents later asked me to leave his house. Since I left till now, he has not shown up to ask why I left or ask after me.
“My first daughter, almost five years old, has never attended a school before but I would like them to be educated.”
Congenital disorders, leading global disease burden
According to the World Health Organisation, congenital disorders, also known as birth defects, are structural or functional anomalies that occur during intrauterine life.
Also called congenital anomalies or congenital malformations, WHO noted that these conditions develop prenatally and may be identified before, at birth or later in life.
WHO
The global health body estimated that six per cent of babies worldwide are born with a congenital disorder, resulting in hundreds of thousands of associated deaths.
While stressing that some congenital disorders can be treated with surgical and non-surgical options, such as cleft lip and palate, clubfoot and hernias, WHO noted that others, including heart defects, neural tube defects, and Down syndrome, autism can cause lifelong impacts.
“Congenital disorders are one of the main causes of the global burden of disease, and low- and middle-income countries are disproportionately affected. These areas are also less likely to have facilities to treat reversible conditions such as clubfoot, leading to more pronounced and long-lasting effects,” WHO added.
The global health body, however, described autism, specifically as a diverse group of conditions related to the development of the brain.
WHO noted that about 1 in 100 children has autism and that the abilities and needs of autistic people vary and can evolve.
“While some people with autism can live independently, others have severe disabilities and require life-long care and support.
Signs of Autism
“Autism often has an impact on education and employment opportunities. In addition, the demands on families providing care and support can be significant. Societal attitudes and the level of support provided by local and national authorities are important factors determining the quality of life of people with autism,” the health body concluded.
Stigma related to birth defects causes relationship strains
Research indicated that Mary, Funsho, and others whose partners abandoned them due to their children’s deformities are not alone in their experiences.
A study published in the Journal of Family Issues found that among parents of children with autism spectrum disorder, 25.4 per cent experienced relationship breakdown or divorce.
The study also revealed that parents of children with more severe deformity cases were more likely to experience relationship problems.
The study found that parents’ perceived stigma and shame related to their child’s ASD diagnosis contributed to relationship breakdown.
The researchers also discovered that parents who reported higher levels of stress and anxiety related to their child’s disability symptoms were more likely to experience relationship breakdown or divorce.
The study also discovered that children’s behavioural problems and difficulty with social interactions were associated with an increased risk of relationship breakdown or divorce.
The researchers, however, suggested that the stress and challenges associated with raising a child with ASD can contribute to relationship breakdown and divorce among parents.
Finding strength in adversity
Despite being abandoned by their spouses, the single parents who spoke with our correspondent said they found happiness in their special needs children.
According to them, they want their stories to serve as an inspiration to families around the world who face the daily struggles of raising children with birth defects.
These women said giving up was not an option and they instead, found strength in their children’s smiles and got unflinching support from non-governmental organisations.
Funsho told PUNCH Healthwise that she connected with other families with Down Syndrome children, and together, they created a support network that shared struggles and celebrated every small victory.
“It is been a journey filled with tears, laughter, and growth. Although Alex’s departure was painful, it forced me to discover an inner strength I never knew I had. Today, Michael is thriving, and I couldn’t be more proud of his progress.
“Our journey together has taught me that love and determination can overcome even the most daunting of challenges,” she said with a smile.
Mary, on her part, said each time she looked into Joke’s eyes, she saw hope and a child burning with zeal to triumph.
She added, “Joke’s smile reminds me that she was still the same beautiful child I fell in love with, no matter what her physical limitations were.
“I also have support groups and online communities of parents facing similar challenges. They understand me in ways no one else could.
“They reminded me that I wasn’t alone and that we were all in this together,” she added.
For Omoruyi, cleft lip or palate is not a limitation and children with special needs deserve their place in society like their counterparts.
Importance of government, communities’ support
A Special Education Needs Consultant and Certified Autism Specialist, Temitope Senbanjo, noted that raising children with congenital abnormalities and autism presents considerable challenges, even for families with access to top-notch services both locally and internationally.
Senbanjo
She stressed that the process becomes even more difficult if parents are not actively involved in their child’s continuous support at home.
The specialist noted that a child’s progress can be affected in the absence of parental involvement, even in the case of high-quality therapies and intervention programmes.
The autism specialist said in many cases, one parent, often the mother, must sacrifice her career to provide consistent support at home.
According to her, this dedicated support system often substantially improves the child’s condition.
While stressing that fathers often leave when a child has a deformity, she lamented that this can leave the other partner to shoulder the responsibilities alone, leading to significant emotional and financial stress.
She, however, said government intervention could play a crucial role in alleviating these challenges.
Senbanjo suggested that providing subsidies for therapy fees and organising support programmes for such mothers would offer much-needed relief.
She also said creating forums and support groups can help parents realise that they are not alone, thus, fostering a sense of community and shared experience.
While full governmental support may not be feasible, the autism specialist said partial subsidies and sponsorships could significantly reduce the financial burden on families.
She added that co-parenting is vital for the child’s development, and parental unity is especially, critical upon receiving an autism diagnosis.
“Even when children with autism receive the best services, if parents aren’t actively involved at home, it’s challenging to sustain the progress,
“Parental engagement is crucial for the child’s development. Families must come together to plan and support each other, ensuring the best outcomes for their children
“Government support is vital. Subsidising therapy fees and creating support programmes can provide much-needed relief. Forums and support groups can help parents feel less isolated and more understood,” she stated.
Senbanjo advised parents to seek professional guidance and proper diagnosis when they notice developmental delays in their children.
She stressed that early intervention is key for a child born with congenital defects, and said parents must avoid unqualified practitioners, and opt instead for certified centres and professionals.
While noting that raising a child with special needs requires immense dedication and support, Senbanjo called on governments and communities to step up and provide the necessary resources and support systems to ease the burden on families.
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