My newborn caught a dangerous form of strep. He will live with the side effects for the rest of his life.

• Deborah Twell and her partner welcomed their first baby, William, in June.
• Shortly after being born, William became very ill, and doctors found he had caught group B strep.

This as-told-to essay is based on a conversation with Deborah Twell. It has been edited for length and clarity

I found out I was pregnant in October 2020, but after three miscarriages, I wouldn't let myself feel the joy of the new life growing inside me until I was fairly confident I would carry the baby full term. When I hit the 20-week mark, I finally felt a flutter of excitement at the thought of holding my baby in only a matter of months.

William was born in June. He was perfect. We stayed in the hospital for five days so I could recover from some hemorrhaging during the birth, but William appeared completely healthy, and there were no concerns about sending us home.

The first few days at home were full of finding our feet as a family of three. William was really irritable and hard to settle, but we had heard it was common for babies to have colic and put it down to that. When he was 13 days old, we started to wonder whether his fussiness was more than colic. We just couldn't calm him. When we took his temperature, we were alarmed to find the thermometer read almost 102 degrees Fahrenheit.

I rang our out-of-hours doctor, and they instructed us to head right to the emergency room. We were seen immediately and given several antibiotics but still didn't fully comprehend the severity of our son's case, thinking it was just a fever that would go down with medicine.

As we waited for a room at a ward, I overheard a nurse instructing the patient next to us to stay quiet as there was a seriously ill baby right next door. That was when the ball dropped — William was very sick.

My son had caught group B strep

The following hours were a bit of a blur. Between 10 and 15 people surrounded his cot and put him on oxygen right away. He was seizing, and they were trying to get the seizures under control and stabilize him.

Once it was safe, they moved him to an operating room to put him on life support, where we watched as they carried out the six-hour procedure. It's the most traumatic memory I will ever have.

William was transported to one hospital for heart-condition tests, and then to another hospital where he was given more tests and scans, including an MRI. The doctors reported back that William had late-onset group B Streptococcus, which had turned into sepsis and meningitis. The MRI confirmed that William had suffered brain damage from the seizures.

As I researched group B strep, I became dejected because it was something we could have tested for during my pregnancy. If we had known about the infection, he could have been treated. But because the infection is not routinely tested for in the UK, William will live with significant challenges for the rest of his life.

We brought him home for the second time after nearly two weeks in hospitals. After three weeks, he started to have seizures again, so he was brought back in for observation for another five weeks. A second MRI showed a blockage on the brain causing the seizures, so at only 12 weeks old, William had brain surgery.

William is 10 months old now, and he is a delight to both me and his dad. We are still processing everything we've been through. The emotion sometimes just hits me out of the middle of nowhere. But I just have to get on with it.

We have to be strong for William, to fight for him. He is the one getting us through this, even on the really hard days.