Today’s post comes from the lovely Kate from Over At Kate’s who has been sharing her pregnancy diary and the team were all eagerly anticipating hearing about her new arrival. Unfortunately baby Frank got very poorly a few days after birth and today Kate is sharing the story of how he has fought Group B Strep Meningitis and how the family have coped with the very scary return to hospital after his birth.
Some of you will remember me from my pregnancy diary which I have been sharing on these pages over the last few months. I had hoped that my last instalment would be short and sweet and focus on my experience of the third trimester and of course my labour – both of which I was very lucky with! However, just days after bringing my little boy home he was re-admitted to hospital with Group B Strep Meningitis. I have decided to share my story in the hope of raising awareness of this cruel disease, so here goes…
On Friday 24th March at 08:49 we welcomed our beautiful baby boy into the world. I was very lucky in that my labour was straight forward and dare I say, actually not as bad as I imagined! We were discharged from hospital the next day making it home just in time for Mother’s Day. Both Chris and I felt on top of the world, we couldn’t believe how lucky we were.
During the night on Mother’s Day baby Frank suddenly seemed reluctant to feed. I had been struggling with breast feeding a little so was doing a combination of breast and bottle which had been working fine, but suddenly he wouldn’t take either. After the first feed I wasn’t too worried, as he’d fed well during the day and was still only 3 days old, but when he wouldn’t feed again 2 hours later I started to panic a little. We rang the midwife helpline who told us that there was nothing to be concerned about, but when he wouldn’t feed again another 2 hours later I couldn’t shake the feeling that something just wasn’t right. Chris and I decided to take him into A&E.
Now I am sure that the doctors and nurses in A&E must see hundreds of new parents worrying about the tiniest of things, and I would imagine that this explains their attitude towards us. We were kept waiting for 4 hours and told that we would be sent back to the Post Natal Ward to work on a feeding plan. It was only on our insistence that they eventually did a blood test. The results came back to show that Frank had an infection and at this point we were transferred to the Children’s Ward for further investigation.
We got settled on the ward and all the Doctors and Nurses reassured us that this was most likely just a common cold, but as a precaution they did a number of tests to rule out more serious infections. The first of those being a lumbar puncture which tests for Meningitis. We weren’t in the room when they did it but we could hear Frank’s cries from down the hall, it was horrible. But what followed was worse than we ever could have imagined.
The nurse that was looking after Frank was so lovely, I will never forget her kindness. She really took the time to explain everything to us, and all the possible outcomes. She, and several others, told us that as Frank seemed so well in himself they were confident we had nothing to worry about. However, while we were waiting on the results of the lumbar puncture Frank suffered a seizure. Chris and I were alone in the room with him at the time, we pulled the emergency cord and within seconds the room was full of doctors and nurses all crowding around Frank. It was truly the most horrific thing I have ever seen and will no doubt haunt me forever.
As a result of the seizure, Doctors immediately suspected that Frank did indeed have Meningitis, and the result of the Lumbar Puncture was rushed through and confirmed their suspicions. The consultant explained that he had contracted Group B Strep, which is an infection carried by as many as 1 in 4 women, that can be transferred to the baby during labour. I had never heard of GBS and now understand that in the UK we are one of the few European countries that do not routinely screen for it during pregnancy. There are very few symptoms in Mothers meaning that I, and many others that may have it, would be completely oblivious to the fact that they were carriers. Not only did I have to accept that my precious baby was seriously ill, but on top of that I now knew it was an infection that he had caught from me. The guilt was just too much to bear.
The hours that followed are all a blur if I’m honest. I do know that I passed out at some point, most likely as a result of shock. Just hours ago we couldn’t imagine being any happier, now we were living out every parents worst nightmare. We waited as Frank was taken to theatre and intubated, he would need to be transferred to a specialist hospital where he would be placed in Intensive Care.
It was several hours before we were transferred to Kings College Hospital at around midnight. Frank was settled into a private room and Chris and I were also given a room to stay in, which we were so very grateful for. We stayed by his side for as long as we could before we were told to go back and try and get some rest and that they would come and get us if there were any developments overnight. Safe to say, neither of us slept a wink that night waiting for the dreaded knock on the door. The following morning we ran back down the corridor to him and learnt that he had suffered 4 more seizures overnight. The pain just kept on coming.
Our families came to be with us every day and we all just sat by his side, hoping and praying and crying in equal measures. Without the support of our families I honestly don’t know how we would have got through it. We spent so many hours just sat by his side, watching and learning as the time went on, about the many machines that he was hooked up to. It’s amazing how much you pick up when you spend as long as we did watching those machines. Every day we seemed to focus on a new reading – first his oxygen level, then his heart rate, the next day something else. We would watch with such anxiety as the readings went up and down again and again.
The medical team in Kings were just so unbelievably fantastic. We had a nurse with us and Frank 24/7 so there was always someone there to answer our many questions. They were just so good at explaining everything that they were doing. The first few days were slow, it was simply a case of monitoring him and keeping him stable. The goal was extubation but of course we had to be sure that he was able to breathe on his own before the tube was removed. Eventually the time came to do so, it was terrifying and amazing at the same time. He responded really well. Already at just one week old our little boy was proving himself to be one tough cookie!
Once the tube was removed we were able to hold him. He was still hooked up several machines and the wires made me very nervous. Nevertheless, that cuddle was just the most amazing thing. I just never wanted to let him go. It broke my heart to think what he had been through already at just one week old.
After what felt like an eternity but was in fact just 5 days, Frank was discharged from Intensive Care and we were transferred back to our local hospital to see out the rest of his course of antibiotics. I was nervous to return to the hospital where we had such terrible memories from that awful first day but the fact that he was back on the general ward showed just how far we’d come in such a short amount of time. It was amazing of course, but the difference in the level of care came as a shock. I don’t mean the quality of care, the medical team were equally fantastic, but in ICU we had someone watching over him 24/7. Now the nurse came into check on him every 4-5 hours. Obviously this was positive, as it was a reflection of the progress he had made, but it meant that I felt this overwhelming pressure and responsibility to keep watch over him and react if something went wrong. I completely under-estimated how difficult I would find the time here. Only one parent was allowed to stay in the hospital so Chris had to go home at night which was hard on both of us. For Chris, driving home with an empty car seat, sleeping next to his empty moses basket must have been awful. For me, being alone when the ward was dark and quiet is when the reality of what had happened hit me.
Eventually, 15 days after we had taken him to A&E, we were able to go home. The progress our little man had made in just 2 weeks was unbelievable. We have a long road ahead of us however. Meningitis brings with it a number of long term effects, and we won’t really know how Frank has been affected for months, even years. That being said, so far he seems to be doing incredibly well. We are already beginning to wean him off the seizure medication, and his physio sessions are going well. This week he will have an ultra sound on his brain and next week a hearing test. Our lives will be taken over with appointments for the foreseeable future but that’s ok. I am just so pleased that they are keeping an eye on him.
Every day that passes the memory of what we have been through fades a little. Undoubtedly it is going to stay with us forever but it does us no good to dwell on it, so we have to try our best to forget the nightmare and remember just how lucky we are to have our little boy home.
I felt that it was important to share my story to raise awareness of GBS and Meningitis. Currently GBS testing is not standard procedure on the NHS. Now can I just say that in no way do I mean this to come across as a criticism of the NHS. My opinion of them could not be higher after what they have done for my little boy, I will be forever grateful. I have had several discussions with midwives/health professionals who have advised that GBS is transient and there are reasons for not testing, my intention is not to begin a discussion as to why they don’t test. I simply want to make people aware that you can buy tests online should you wish to.
The tests are available here and cost just £35 and in my opinion, it’s worth at least looking into if you are expecting. Had I known I had the infection, both I and my little boy would have been treated right away and the GBS would most likely not have led to Meningitis.
Lastly I feel it is important to raise awareness of Meningitis and the symptoms to look for, particularly in newborns. Previously I always thought Meningitis presented as a rash but I now know that there are several other symptoms to look for, and often by the time the rash has developed it can be too late. The Meningitis Now website is worth a look.