Over the first few days of his life he cried a lot, but what newborn doesn’t? He had seemed a bit warm, but didn’t have a proper fever. I knew he wasn’t feeding brilliantly, but my husband and I suspected that he had tongue tie and were going to get help from a feeding clinic. Several medical professionals had seen him in the course of their work and in social visits and none of them thought anything was amiss. The midwives who handled him at his five-day-old check-up didn’t notice anything wrong either, until they realised he had lost weight. A lot, actually. In less than five days after his birth, he had lost 18 percent of his body weight. Babies usually lose a bit of weight after they’re born, but that was edging toward twice the upper limit of “normal”.

I was devastated when they told us we had to take him to be readmitted to the hospital for feeding support. I sobbed the entire 45 minute drive to the hospital. “How could I not know he was crying because he was hungry? He’s been starving and I didn’t know it. What kind of mother am I?” I asked my husband.

“A good one, you have been doing everything you could to help him eat.” He tried to reassure me, but I was distraught. After we arrived at the hospital the medical team began their observations of our son. One of these routine checks revealed that our baby had developed a very high temperature.

“We need to send him down to the neo-natal ward so they can check him and maybe give him some antibiotics,” a doctor told me. At first, I was confused. I wondered why they wanted to give him antibiotics because he wasn’t ill, but as my husband logically pointed out, “If they want to give him antibiotics, he probably needs them.”

With a nurse and doctor walking alongside me, I wheeled his little bassinet through the maze of corridors to the specialist unit. My little boy, bundled up in his new swaddling sack with the cute little green peapods on it, asleep in front of me. I was with him while they placed him on the table and tried, several times, to get a line in. I held his hand, I talked with him to try and soothe him, to try to wipe out the pain I could see in his eyes. I thought that was all they needed to do – insert some IV lines for a dose of antibiotics, just in case. But the next thing I knew, we were wheeling him into the heart of the unit, where he was checked by another doctor, his temperature was taken again, and the doctor ordered a lumbar puncture.

Something was very seriously wrong with my baby and it was beginning to sink in. I was with him while they held his little body, curling it into a C shape to make his spine most accessible for the needle. All I wanted was to hold my baby close, to cuddle him skin-to-skin and let him know that his mommy was there and she was taking care of him. Even at this point, I was planning how that night I would feed him and cuddle him, soothing away the trauma we had both experienced that day. I still thought it would be possible. “Can I hold him skin-to-skin?” I asked.

“No,” the doctor curtly replied, “You can’t. Maybe you can in the morning.”

As I watched the nurses hover around his small, limp body, putting lines in and setting up monitors, it finally hit me. This wasn’t a blip. It wasn’t precautionary. This wasn’t a sort of bad dream that would be over in a few minutes. The doctors were very concerned. There was something gravely wrong with my little boy. We didn’t yet know what was causing it, but he was very, very ill. This was our new reality.

My husband and I spent the next several days by his bedside.

At first they had ruled out the really scary thing, meningitis. But then the lab results came back and the diagnosis was in: our baby did have meningitis, in particular, streptococcus B (strep B) meningitis. I was able to learn more about strep B through the help of the Group B Strep Support charity.  No one in my antenatal care had talked to me about it. I had only once heard something very vague about it, ever, and that was through friends.

The NHS doesn’t provide the test for every woman;  they only check at-risk women. But 40 percent of babies who are infected have mothers who, like me, don’t fall into that category.  We could have paid for an accurate test privately for about £40 pounds (about USD50). But we didn’t know. What the doctors and midwives never told us could have cost our son his life.

Thankfully, our son developed a fever (not all newborns with strep B do). Thankfully, a junior doctor decided not to risk a wait-and-see attitude and, instead, put him on antibiotics right away. By the time we knew what it was, our boy was already responding well to those antibiotics.  He would almost certainly get better, but the timing and outcome were unknown.

No one could tell us what marks the disease would leave on him, especially not what impact it would have on his brain. But they were hopeful that they had caught it early enough, before it could do too much damage. He came home from the hospital after two weeks of antibiotic treatments. He was well and he was doing the things newborns are supposed to do: staring at our faces, sticking out his tongue to mimic us, watching lights and looking out of windows. Our little baby was healthy again.

But it didn’t last. His brain had been injured.

At two months, he developed hydrocephalus and had to have brain surgery. We found out the night before I was planning to fly with him to introduce him to many of our relatives for the first time. We cancelled the trip, and less than a week later he underwent brain surgery at John Radcliffe Hospital [9]. If they hadn’t intervened, the fluid would have built up in his brain until the pressure started causing him to have seizures which would have led to a painful death. Even with knowing how vital the surgery was, it wasn’t easy for me to hand him over to the anaesthetists, wondering how he would react to the anaesthetics and if anything bad would happen to his brain or to him during the delicate procedure. Would the same baby come back to me?

Thankfully, he did. After the surgery he was happy and healthy again.

Unfortunately, it didn’t last that time, either.

When he was six months old, while we were visiting the other side of the family, his hydrocephalus returned. We spent the week around his first Christmas almost entirely in hospital, waiting for another brain surgery. This time, it was obvious that it was bothering him. He was lethargic and didn’t care about his presents or the cool, crinkly paper they came wrapped in. Every time they extracted fluid through his fontanelle to relieve the pressure, we could see an almost immediate change in him. He was cheerful and playful once again. On New Year’s Eve, he had a second surgery during which the medical team inserted a permanent shunt just under his skin alongside his skull to channel excess fluid from his brain into his abdominal cavity. Barring a divine miracle, he will need this shunt for the rest of his life.

He is now a year old – a delightful, happy boy who is constantly checking to see how things are made and trying to figure out how they work. His development is completely on track, with the exception of his gross motor skills. But even those are catching up rapidly. There could be complications in the future. He may have more problems with hydrocephalus. His shunt could get blocked and require further surgery. But we have every reason to believe that he will go on to live a completely normal life, despite everything he has been through. We are incredibly blessed that he is here and that he is doing so well. We have a brilliant son and we intend to enjoy today the gift that God has given us.

However, the lives of babies are still being put at risk because no one is checking their mothers for this deadly bacterium. It’s time for that to change. One in every four women carries this bacterium without knowing it. Mothers and fathers need to know about strep B. They need to know how they can help to prevent the same thing happening to their baby that happened to ours.