Discovering that your baby has a severe condition is difficult news for any expecting parent – all the more so when it has the potential to dramatically impact brain development and will require surgical intervention just days after birth.
Dr Darsi Boungou-Poati, a neurosurgeon practising at Netcare Pinehaven Hospital, notes that this was the case for one of his youngest ever patients, who, at just 11 days old, underwent a complex procedure for hydrocephalus, or blockage of water flow in the brain – a diagnosis that came to light during his mother’s sixth month of pregnancy.
“It was a shock when, during a routine check-up, I was told that our baby had hydrocephalus – a condition that might result in severe brain damage. As an experienced mother of three, now expecting my fourth child, I tried to equip myself with as much information as possible, doing a lot of research about the condition and obtaining a second opinion,” says Angela Mahau*, who has opted to protect her family’s identity at this time.
With the diagnosis now confirmed and after considering her options, Angela – who lives in another province – chose to plan her baby’s birth with Dr Christa Diedericks, a gynaecologist and obstetrician practising at Netcare Pinehaven Hospital, where a multi-disciplinary team was established to manage her baby’s condition from the outset.
It was then a matter of waiting until 38 weeks when Dr Diedericks advised it would be safest for Angela to deliver via planned caesarean section. However, at 36 weeks she went into labour and was rushed to the hospital for an emergency caesarean to bring baby Bokang* into the world. Though his mother had already endured so much, the journey was just beginning for this new little person.
Immediate multi-disciplinary intervention
Dr Zoleka Mbhele, a paediatrician at Netcare Pinehaven Hospital, notes that preparation and information are key when managing health complications in newborns. It was, therefore essential to admit Bokang to the neonatal intensive care unit (NICU) shortly after his birth to monitor his condition and assess the way forward as a team.
“From day one, the medical team was mobilised. Dr Boungou-Poati and I worked with the radiologist, conducting scans of Bokang’s brain to obtain a complete picture of his condition, plot a way forward and ensure that his parents were included in the decision-making process and fully appraised of the facts.
“While Bokang’s head was very large due to the fluid build-up, he could breathe independently and had a good heart rate, which were positive signs. Having said this, it was very early days, and the extent of any brain damage could not yet be known,” she says.
Dr Boungou-Poati explains that while not all causes of hydrocephalus are fully understood, the condition includes a blockage which prevents the drainage of fluid that naturally occurs in the brain.
“This is highly dangerous, as the brain is a soft organ contained inside a hard skull for protection. The brain constantly produces cerebrospinal fluid, which is vital for its functioning and which needs to be able to flow. If it cannot drain, the fluid puts pressure on the brain as the skull cannot expand, which can result in permanent damage to this vital organ.
“In babies, the skull is still growing and has slightly more flexibility than an adult, so a build-up of fluid will contribute to an increase in the size of the baby’s head, but the brain will still very much be impacted by the pressure caused and can result in developmental delays with knock-on effects later in childhood and life. For this reason, we advocate for early diagnosis and intervention,” he says.
To address Bokang’s hydrocephalus, Dr Boungou-Poati made a small incision behind his ear to insert a cerebral shunt into one of the brain’s ventricles, or pipes. This is a specialised device that includes a valve, allowing the flow of fluid and fine catheter-like tubing to divert this fluid away from Bokang’s brain down into his abdomen, where it can continue to be processed out of his body.
“Following insertion of the shunt, which will remain in place permanently, the fluid immediately began to drain properly from Bokang’s brain, and while neurodevelopmental outcomes will need to be monitored on an ongoing basis, we began to see early improvements, such as the instinct to suck when feeding, which had not yet taken hold,” he says.
Hopeful outcomes for Bokang
Dr Mbhele notes that the brain starts developing at around three weeks old in the womb, and the majority of its growth occurs in the first two years of life, so the sooner hydrocephalus is addressed, the better the chances of positive medical outcomes.
“While the risk of brain damage can never be excluded in these cases, the development that occurs in a baby’s brain in the first few years may be able to change the overall outcomes for the child. Following the procedure, Bokang appeared to begin responding well and has been feeding nicely,” she says.
“We are doing regular check-ups and tracking his developmental milestones. His mom, Angela, has continued to be involved in the follow-up care he is receiving from the physiotherapist to assist him with muscle strength in the control of his head, which is heavier than usual.”
Looking back on their journey to this point, Angela says that there were moments when, as a mother, she was so consumed with worry that she could not eat or sleep, particularly during those first three weeks of his life that were spent in the hospital, but that it has unquestionably been worth it.
“By taking the time to explore our options and thanks to the wonderful teamwork of the doctors at Netcare Pinehaven Hospital, Bokang is here with us now, a healthy three-month-old, and he is doing well. “Pregnancy and childbirth are tough enough without bumps in the road like this, but it can happen. My advice to expectant moms is to empower yourself with knowledge, ask as many questions as possible, get a second opinion and choose the medical team you feel most comfortable with,” concludes Angela.
*Not their real name.