My first pregnancy was eventless. It could easily have been a textbook-perfect pregnancy. Standard morning sickness, slightly odd cravings like pizza and ice cream or salsa and coloured popcorn, belly popping out right on time and no dramatic breaking of water.
The birth of my child (they/them) was a little more traumatic. What followed was a very scary battle with a deadly disease called Citrobacter that should have cost my child their life. But it didn’t. This is our story.
Growing too fastÂ
I was absolutely petrified of giving birth. I was 19 years old and had been fed horror stories from other mothers. Because I was so scared, my mind fought against my body and the doctors had to use the suction cup to help my child be born.
After my child’s birth, my mum and I would take my newborn to the local chemist where a midwife would do all the standard measurements.
“She noticed my child’s head was growing too fast. It was growing at a rate of around 1 cm per week.”
I noticed other things as well like they cried all the time, like they were in pain. They wouldn’t be able to keep food down (and had spectacular right-down-the-front-of-my-shirt aim). After a couple of weeks, the midwife suggested I take them to the doctor.
Very quickly, we were booked in for ultrasounds and an EEG before being sent for a CAT scan. The next thing I knew, we were seeing a paediatrician and were sent to Randwick Children’s hospital for more tests.
Cysts discovered
There we discovered there were cysts on my 8-week-old baby’s brain and they needed to drill a hole in their skull to drain some fluid to determine the cause. There isn’t much that’s more terrifying than seeing your child wheeled away into a theatre, except maybe fasting an infant beforehand.
Then came the diagnosis. My child had Citrobacter.
Not hopeful for a good outcome
Citrobacter is a form of bacterial meningitis that can cause cysts like those present on my child’s brain. It is rare in newborns and doctors are learning more about it all the time.
Back in 2000 when my child was born, there wasn’t as much information available, and the Citrobacter prognosis wasn’t good. According to NCBI, even today, “despite improvements in diagnostic imaging techniques, surgery, and antibiotic therapy, approximately one-third of infants with abscesses die, and one-half sustain CNS damage.”
A small team of doctors sat me down and explained the rarity and treatment. Treatment consisted of a central line (a big catheter placed in a vein near, or just in the heart) which would administer antibiotics to my child. We would have to remain at Randwick until my child was well enough to move back home and stay in hospital there.
“The best-case scenario they gave me was my child would survive but would likely need help to walk and talk. But they also said human brains are amazing things and anything is possible.”
For several weeks we learned to call the hospital our home. The biggest source of comfort for me was the nursing staff. They would tell me stories about how amazing an infant brain can be, with healthy parts compensating for damaged parts.
Each nurse was so excited to see my child sitting and eating solid food and reaching for toys and spoons.
“The small things we take for granted were celebrated because we didn’t know if my child would ever be able to do them.”
My child is a Citrobacter survivorÂ
After several weeks, we went home. When my local doctor was informed about my child’s condition and prognosis, he suggested it might be better if my child did not survive. This was devastating to hear as a nineteen-year-old trying to do the best she could in an unimaginable situation. In hindsight, I can see where he was coming from and thinking about the prospect of a limited quality of life.
My child needed special plates for their shoes because they were found to have a minute version of Cerebral Palsy. They had developed juvenile epilepsy due to the scarring on their brain. They also had asthma, but it’s unsure if that was related to Citrobacter.
But my child seemed to inherit my stubbornness. Not only did they survive this rare illness, but they amazed the doctors and nurses both in my local hospital and Sydney with their progress.
Milestones were met on or near the average age, their mobility, speech, and motor skills developed like a child who hadn’t been sick at all. For a long time they were known as a miracle child at my local hospital.
My child grew out of epilepsy and asthma and cerebral palsy isn’t noticeable unless you know what you’re looking for, and you really have to look.
They are a warm, caring person who always wants the best for everyone. Not only did my child survive an illness that still takes lives today, but they exceeded the expectations of the doctors tenfold.
While this was something I wouldn’t wish on any parent, the life lessons I learned about myself, and the magic of the human brain have stayed with me for the last twenty-three years. I am so grateful to all the medical staff involved in my child’s care and that they are here today, continuing to shine in their own way and making me proud on a daily basis.
