Frank had contracted Group B Strep meningitis.
He responded well to treatment but the disease has left him with after-effects, the extent of which are still being determined. Kate tells their story here.
“Our baby Frank was just three days old when he began to refuse his milk. The first time we weren't too worried, but when he refused his next feed we began to think something wasn't right and decided to take him in to A&E.
“We were kept waiting in A&E for four hours. Eventually they did a blood test but managed to lose the results and so had to repeat it. When we finally got the result it showed that Frank had an infection and we were transferred to the Children's Ward. Other than not wanting to feed and perhaps being a little lethargic he seemed otherwise okay – he didn't have a temperature or seem in any pain.
“We were moved to the Children's Ward and they explained that they would do a lumbar puncture as well as some other tests, but reassured us that it was most likely just a cold or minor infection and the tests were just to rule out anything serious.
First seizure
“Shortly after being admitted to the ward however, Frank had his first seizure. He was hooked up to a heart rate monitor and I watched as it shot up from 140 to over 200. I screamed and pulled the emergency cord and within seconds the room was filled with doctors and equipment.
“Frank was whisked away and taken to theatre where he was put on a ventilator. Doctors took us into the staff room and explained that our beautiful newborn baby had bacterial meningitis. We were told that he would need to be transferred to Kings College Hospital Paediatric Intensive Care Unit.
“When we got to Kings the doctors explained how seriously ill Frank was, confirming that he had the Group B Strep strain of meningitis. We kept asking over and over whether he was going to be okay but all they could tell us was that we needed to take it hour by hour and wait to see how he responded to treatment.
Responded really well
“Thankfully he responded really well and after five days he was able to come off the ventilator and began breathing for himself. A short while later we were transferred back to our local hospital where we would see out the rest of the two-week course of antibiotics.
“While we were in the hospital doctors briefly explained the possible after-effects that can occur as a result of meningitis but, if I'm honest, we weren't ready to hear what they had to say. At that moment in time all that mattered was that we got to bring our little boy home – we could deal with whatever the future held, as long as we got to take him home.
“Once we were home the follow-up appointments began and initially everything seemed very positive. Frank had an audiology exam at 10 weeks old, and a cranial ultrasound a week or so after that, and both were clear.
“He was having physio every month and the first couple of appointments had gone well; she had been pleased with his progress. Frank had been on some very strong anti-seizure medicine, which we managed to wean him off at 12 weeks.
Concerns with development
“I don't know if the medicine was masking the muscle issues or if it was just a coincidence timing wise, but it was around this time that the physio began to mention a few concerns with his development. At 12-weeks-old he was not yet reaching for toys and he kept his fists clenched most of the time.
“Gradually over the weeks it became apparent that he has increased tone in all four limbs, and some of his movement was not quite right – he couldn't lie comfortably on his side for example and would arch his back a lot. From my own research I knew that these were signs of cerebral palsy, one of the possible after-effects of meningitis. I discussed this with his therapist and she agreed that he was showing signs.
“Frank is now a few weeks away from his first birthday and is quite delayed developmentally. He cannot yet sit unaided or crawl or roll over, but he is making progress – slowly but surely his hands are beginning to open up and he is showing more and more interest in toys and playing. We don't yet have a diagnosis but we are fully prepared to be told that he does have cerebral palsy at some point in the near future.
The happiest little boy
“Despite everything that he’s been through our Frank is the happiest little boy you will ever see. He has the most infectious smile and giggle and brings us so much joy! We don’t know what the future holds for our little boy but we are hopeful as we know what a strong and determined boy he is - he has already faced more in his short life than most do in a lifetime.
“We have since been back to visit the staff both at Kings and at our local hospital to show them how well Frank is doing. On our last visit we were told by doctors that had we not taken Frank to hospital that day, or even waited just a few hours longer, it is very unlikely that he would be with us today.
“We are eternally grateful to the incredible medical team at Kings and the PRUH for saving our little boy. Our hearts go out to everyone that has been affected by this cruel illness – we know many others are not as lucky as we have been.”
Update - June 2020
"Frank is now 3 years old and as expected did receive a diagnosis of cerebral palsy at around 15 months. He was also diagnosed with epilepsy shortly after.
"But he hasn't let these things get in his way. He has the biggest personality and the most infectious smile. He brings us and everyone around him so much joy and inspires and amazes us every day. He works very hard with all of his therapies but always enjoys himself and makes everything fun. We couldn't be prouder of him and continue to be grateful every single day."
