Hydrocephalus: Raising my little hydro warrior
By Engr. Khalilah Yahya Aliyu
September was the month dedicated to raising awareness of various medical conditions, among them hydrocephalus, which is commemorated in the United States on the 20th. This article was meant to have been published as my contribution to this course, but you will have to forgive me. The pen became too heavy for me to write as it required revisiting emotional wounds and acknowledging future fears.
I am a mum to a vibrant two-year-old blessed with this little-known condition–Hydrocephalus. Or so I thought, until I had him and realised hydrocephalus has quietly existed around us all along. During my final ultrasound before delivery, I curiously read the note from my OB-GYN: “mild ventricular dilatation.” At the time, “dilatation” only meant one thing to me, which was that my body was preparing to bring my baby into the world. What caught my attention, though, was how different this report was from the one I received during my first pregnancy.
As soon as I got home, I turned to Google: “What is mild ventricular dilatation in a foetus?” I learned it’s also called ventriculomegaly. It is a condition characterised by enlarged ventricles (fluid-filled spaces in the brain). The diagnosis was mild, and I read that it might normalise. I was still advised to watch for signs like visible veins on the scalp, projectile vomiting, and a rapid increase in head size.
Let me take you back a bit. Hydrocephalus, in direct translation from Greek, means ‘hydro’ (water) and ‘cephalus’ (head). Literally speaking, “water in the head”. But it’s not just any water. It’s cerebrospinal fluid (CSF). While CSF is essential, an excess of it leads to hydrocephalus.
Although some cases are congenital, it is critical to note that hydrocephalus can be acquired either due to old age or blunt trauma to the head. The case that scared me to my bones was when we were researching for a registered Medtronic vendor to purchase Ja’far’s shunt. We heard about a ten-year-old whose head accidentally hit a wall. The trauma distorted the flow of CSF, and he was not diagnosed on time till he nearly lost his mobility and sight. The shunt surgery restored his health.
I gave birth via emergency C-section after a prolonged labour. The first thing I checked when I held my baby was his head. It looked normal, covered in a full mass of hair. I couldn’t even see his scalp. Due to the labour complications, we stayed in the hospital longer. On the second day, neonatal jaundice set in, and my baby was admitted to the Intensive Care Baby Unit (ICBU). By the third day, I noticed something unusual. He vomited after every feed, and not just regular spit-up. It was forceful, the typical definition of projectile vomiting. I informed the paediatrician, who advised smaller, more frequent feeds. I followed the advice, but the vomiting persisted. Luckily for us, he had a voracious appetite, and after each episode, he’d eagerly refill his tummy.
We were discharged after 10 days. Grandma gave him his first haircut, and that’s when we noticed the intricate network of veins on his scalp. Visitors had all sorts of suggestions, from saffron oil to headache “ciwon kai” remedies. But deep down, I knew what it was. I anxiously waited for the final symptom to appear. Within days, his head began to enlarge, and his fontanelle (Madiga) wasn’t pulsating as it should. The vomiting continued. I turned to my husband and said solemnly, “Baby Ja’far needs urgent medical attention.” Grandma agreed. I trusted my instincts, and kudos to my husband, family, and friends for providing me with the strength to keep hope alive. They left no stone unturned to make this trial bearable.
At precisely one month old, we took him to Aminu Kano Teaching Hospital. We first saw a paediatrician at the GOPD, who ordered a scan, and my fears were confirmed. He has Dandy Walker Syndrome (DWS), which has led to excess fluid buildup in his head. I cried. Yes, I did. But I was also hopeful because I had read that early intervention could improve his chances of living an everyday life. We were given a medicine, Acetazolamide, that must be compounded to suit a child’s dosage. The medication is to reduce cerebrospinal fluid (CSF) production and help manage intracranial pressure. We were then transferred to the Neurosurgical Department, where we met the neurosurgeons on their clinic day, a Wednesday. A strike by resident doctors worked in our favour, allowing Ja’far to be seen directly by a consultant neurosurgeon.
I mentioned how warm his head felt, and the consultant reassured me it wasn’t related to hydrocephalus. “He’s like any other baby,” he said. “He can have a fever”. That was the beginning of our journey. I was frantic. I just wanted him treated quickly to relieve the cranial pressure. He needed brain surgery to insert a shunt that would regulate the CSF flow. Delays could cause irreversible damage. The medical team was dedicated and compassionate, particularly the doctors. He had the surgery successfully at two months old, and we watched him ace his developmental milestones. We celebrated his second shunt anniversary on June 19, 2025.
After Ja’far’s diagnosis, my curiosity deepened. I consumed every piece of literature I could find related to hydrocephalus. Wednesdays became my learning days, not just from the doctors but from fellow patients and caregivers. I remember overhearing a professor of neurosurgery advising a mother of another shunted warrior: “You and your partner should properly plan subsequent pregnancies. Gone are the days of ‘just taking in'”. He emphasised starting folic acid six months before conception, staying healthy, and avoiding harmful practices. And of course, make prayer your closest ally as you follow the healthiest regimen possible. Take your child to the hospital because even with limited resources, our healthcare workers continue to perform wonders, saving lives every day. They are our true heroes.
It is pertinent to add, though solemn, that a shunt is a foreign body and can be prone to infection, blockage or malfunction. You must be alert; should you observe the slightest recurrence of any of the pre-surgery symptoms, hasten to the hospital for proper diagnosis. The doctors often reassure us that milestones might be delayed for our warriors. Still, with the appropriate care, they accomplish them over time. Seeing the scars where the shunt is placed, be it the catheter or the pump, and knowing that it is going to be there for life, can be heartbreaking. But I have learned to overcome this feeling by viewing it as a lifesaver because without it, you might not even be able to hold your bundle of joy. Brace up, not everyone’s journey is the same, but be ready for bumps. They can come in the form of incessant headaches, seizures or double incontinence.
I cannot conclude without a strong plea to the government. Congenital diseases are rare. Ja’far’s DWS, for example, ranges from 1 in 10,000 to 35,000 live births. Setting aside funds that low-income parents can access to cover medical expenses will go a long way toward improving our warriors’ quality of life. Make the health sector more robust. Map out a lasting plan to eradicate strikes. It might have worked in our favour, but it has also stalled the needed intervention for some of our warriors, leading to irreversible brain damage. Mandatory, accessible antenatal care, overseen by qualified medical practitioners, will help preserve the rarity of these conditions.
To all my fellow hydro mums, be grateful to the Almighty for the gift and celebrate your little warriors. Whether it’s an inch or a milestone, every step is worth celebrating. Also, you are not alone. We have a community, and we’re here to support one another, always. To everyone who stood by us throughout this journey, I want to say thank you. Where could we have found the strength to carry on without you?
Engr. Khalilah Yahya Aliyu wrote via khalilah20@gmail.com.
