My daughter Rahma, cerebral palsy, and death
By Abubakar Suleiman
“I am sorry, the brain of your child has been insulted.” Those were the words of a friend who is also a medical doctor after reviewing the EEG result of my late daughter, Rahma, three years ago. He continued, “Abubakar, you have a case in your hands, Allah Ya baka ikon cin jarabawa.”
The phrase “brain being insulted” was unfamiliar to me then. I had to start browsing to be sure that the words weren’t what I feared. Alas, it turned out to be what I thought.
Being a twin, Rahma came into the world weak after her twin sister, Rayhana. And she was put in an incubator to resuscitate her. Before the EEG investigation, Rahma had jaundice that was detected when she was just seven days old.
Upon arrival at the pediatric clinic, after her vitals were taken and a series of tests conducted, she was hospitalised. Phototherapy and an exchange blood transfusion were carried out. And that marked the beginning of a pilgrimage, ranging from one consultant paediatrician to another neurologist, then a physiotherapist throughout her 3 years, 2 months and 1 week of existence.
“Hypertonia.” The word a doctor muttered after we were discharged from the hospital drove me to the internet. Slowly, I became an overnight ‘neurologist’ so much so that whenever we find ourselves in the hospital, the doctors were so surprised by how well I understood some medical concepts. Knowing that hypertonia is a form of cerebral palsy sent chills down my spine. What could have led to this? Loss of oxygen during birth? The jaundice that led to the exchange blood transfusion? Abi na all join? إلى الله المشتكى
Cerebral palsy rendered Rahma almost helpless. She could not sit, talk, walk or fall asleep with ease all her life. She doesn’t eat any kind of food. Feeding her required tact. Nutritionists’ aid was sought. Her neck control was only partial. We could only try to improve her quality of life with therapeutic interventions and the support of a caregiver.
While her twin sister, Rayhana, was energetic and quickly enrolled in school, Rahma was mostly on controlled drugs to help her sleep. From phenobarbital, clonazepam, phenytoin, diazepam, to all sorts of medications depending on her weight and other medical variables, as noticed by the doctor. Zamzam water and ruqya weren’t exempted.
Her smile and laughter were expensive. But whenever it appeared, it melted hearts. She shared many features of my late Dad. She is hairy and, in many ways, more uniquely beautiful than her siblings. Her ill health exposed me to the limitations of modern medicine, the high level of professionalism of some doctors and nurses, and, of course, the unruly and unprofessional attitude of others. It also made me renegotiate many priorities in life.
Sicknesses like cerebral palsy drain one psychologically and financially. It pushes one to the boundaries of imaan. In the mix of all these were suggestions, positive and negative. I heard whispers that my ‘Izala’ is becoming too much since I am not willing to try some traditional concoctions or so-called Islamic medicine (whatever that means). Again, I am also not given to superstitions. But alhamdulillah for a strong wife who never wavered in giving her best for Rahma and her siblings. Her imaan was unshaken. It was exhausting, but her resolve was steel-like.
To helplessly watch your child in pain or a medical crisis hits differently. It requires imaan, admonition and strong mental stamina. Whenever Rahma convulsed or cried out due to exhilarating pains, aside from Hasbunallahu wa ni’imal wakeel, all I could tell her was:
اصبري يا رحمة فإن موعدك الجنة إن شاء الله.
“Be patient, Rahma, your final abode is paradise, InshaAllah.” Even though she doesn’t hear me, I find solace in uttering those words.
My family and friends did everything they could to make things easy for me. Not to mention that the emotional, moral,and even financial support from them would amount to being economical with the situation. I was showered with love and admonition during Rahma’s trial and after her death.
Death. When your time is not up, you will not die. Rahma was hospitalised countless times, so I no longer informed relatives, friends or family. It became a routine. Her medical conditions were sometimes complicated and severe, so I often prepared myself for the announcement of her death when receiving some phone calls. But she bounced back. However, when it was time to depart the world, she bade us farewell peacefully in her sleep. It was indeed a bumpy ride and a heavy trail. Alhamdulillaah.
I am optimistic that Rahma has found peace inshaAllah. I pray Allah grants her Jannatul Firdaus. May Allah comfort all parents with children having special needs.









