A Little Frank Update

I never really know if anyone bothers reading these kind of posts and I know perhaps they’re a little out of place on an interiors blog but I can’t help thinking that over the last few months I would have found it useful to read about someone in a similar to situation so I decided just to write it in case anyone else out there might relate. So here goes…

As I’m sure most of you know by now our little Frank was very seriously ill shortly after he was born with GBS Meningitis. I’ve talked openly about Frank’s time in hospital and while I have mentioned on Instagram briefly that he has lots of appointments I’ve never really shared details on his progress.

We had a brief period of just a couple of weeks after being discharged from hospital before the follow-up appointments began and since then we’ve been back at the hospital or at the Specialist Children’s Centre almost every week for one thing or another.

Initially all of Frank’s appointments were really positive. We came out of his first physio session at 7 weeks old with only positive comments. He had an Audiology exam at 10 weeks old which he passed with flying colours, and a Cranial Ultrasound shortly after which also showed as being clear. At the first appointment with the Neurologist we were told how great it was to see such a healthy baby.

At the next physio session however, at around 12 weeks old, the therapist raised some concerns over Frank’s muscle tone and movement. For the first 10 weeks of his life Frank was on some very strong anti-seizure medication (after he had a cluster of seizures at 3 days old) which essentially meant that he was incredibly sleepy most all of the time. This obviously had an impact on his development but it also affected his muscle tone. Once he was weaned off the medication it became obvious that all of his muscles were very tight and some of his movement was not quite right. For example he would arch his back, was unable to lie on his side, he kept his fists clenched most of the time and his arms and legs would go stiff with any heightened emotion. At 3 months old these things weren’t a huge issue we were told, he may simply outgrow them and it would only be if they were still apparent at 6 months that it was any cause for concern.

It came as a shock to us. Everything previously had been so positive that we had really begun to believe that Frank was going to be one of the lucky ones that surprised everyone and made a full recovery. I came home, put Frank down for his nap and began googling everything the physio had just told us (I know, I know – never a good idea!) Every search bought up the same thing – Cerebral Palsy. It was one of the things that had been mentioned to us in the hospital as a possible after effect of his meningitis. As I read the signs and symptoms in babies, it felt like someone was describing my precious little boy – he was showing almost every single sign.

At the next appointment I mentioned that I had been reading up on Cerebral Palsy and that I was concerned that Frank was showing signs of it. I longed to be told that I was just a paranoid mum but instead the therapist simply agreed with me. She explained that generally Doctors don’t like to diagnose before the age of two, so for now now all we could do was wait and see.

I’ll admit for several weeks every spare chance I had, I would frantically google stories of children with cerebral palsy. I couldn’t just “wait and see” I needed to find a story of someone with the exact same symptoms as Frank, and find out what kind of life that child was living. But the thing with CP is that no two cases are the same, so even if I did find an account of a baby similar sounding to Frank, that wouldn’t necessarily mean that things would be the same for Frank later down the line. It took me a while to accept this and to realise that waiting really is our only option right now.

So every day we do the exercises and stretches, I put him in his special chair, we go to Physio, OT, and Hydrotherapy and we try and fit in extra swimming sessions wherever we can as the water helps his muscles relax. At times it all feels like an enormous pressure and responsibility. If we have a day out and I don’t find time to do his exercises I feel guilty, am I delaying his development, is it my fault if he doesn’t make enough progress, am I doing enough? I’m conscious that the poor boy needs to have some fun as well, it’s bad enough that he has so many appointments, I can’t spend every spare minute making him work!

The truth is we don’t yet know whether Frank has Cerebral Palsy. He does have a lot of signs, and they have persisted after 6 months. He’s developmentally delayed, that we do know. At 9 months he can’t sit up, or roll over and he’s not yet picking up toys. But he IS making progress. He’s beginning to bat at toys, and his hands are opening up more than they were previously. At our most recent appointment with the Neurologist he noted some positive movements that he said would be very difficult for a baby with CP to do. So we are hopeful. And we are learning to be patient. But most of all we are making sure we enjoy Frank and every minute of our time together. Whatever the future holds for my little boy, he’s going to be just fine.


Two Months Home


I realised that today marks two months since we bought our little boy home from hospital for the second time. I can’t tell you how quickly those two months have passed. I’ve spent so many hours just holding and staring at my beautiful baby and just thinking about how lucky we are. Frank’s had several follow up appointments already including a brain scan, a hearing test and several physio appointments and so far all seems to be looking good. I feel so incredibly lucky to watch him grow and change every day and already we’ve had a few of those ‘firsts’ that every parent dreams of – first smiles, first time sleeping through the night. (Tough call on which of those was my favourite if I’m honest)  He even rolled over for the first time this weekend!

But the point of this post isn’t to brag about my little man (although I could’t resist sneaking a bit of that in!) :) I wanted to write something about how we are coping two months on from what was undoubtedly the most difficult time of our lives so far (and hopefully will remain the most difficult for the future also!)

I remember the day that Frank was discharged from hospital, one of the Doctors who had been looking after him came and sat with us. She seemed so serious that I was terrified she was going to tell me something had changed and we couldn’t take our baby home. But instead she simply said ‘Don’t expect to go home and suddenly everything be ok. You have been through a tremendous shock and it will affect you. If not straight away then perhaps in a few weeks or months even.’ Turns out she was one wise lady!

The first few days at home I was so very grateful. Obviously for the fact that Frank was doing so well but also for all the simple things in life that you just don’t appreciate normally – sleeping in my own bed, next to my husband, rather than on my own in camp bed in a hospital room. Having a home cooked meal rather than a Sainsbury’s microwaveable. Washing in my own bathroom, choosing clothes from my wardrobe and not a little suitcase…You get the picture. We began to adjust back to our normal lives, albeit with the addition of a newborn so of course much less sleep. Slowly we began to feel like ourselves again. We laughed and joked, something that we hadn’t done for a while. And this lasted for a few weeks. I didn’t think about what had happened, didn’t go over everything we had been through. I just enjoyed every minute with my gorgeous little boy.

I knew that I wanted to write about what had happened, mainly to raise awareness but also as I have always found writing to be quite therapeutic. So every day I wrote a little, and then closed the laptop and parked it for the day. It wasn’t until the day that I published my post sharing our story that it really hit me. I spent a good 95% of that day in tears. Crying at messages I received from people that had been through similar experiences. Or just at messages from people telling me how happy they were that things had worked out. Just crying at anything and everything really. When I looked at Frank that day my heart broke for what he had been through. By the time Chris got home from work I was a complete mess. We spent the evening talking about everything, about how we felt at the time, about how we feel now. About our hopes (and concerns if I’m honest) for Frank’s future and for ours. It was an emotionally exhausting day, but one that we needed.

It’s such a cliche but when you go through something like this you really do find out who’s there for you. It’s incredibly upsetting to be let down by those close to you. In my mind sadly the behaviour of some has been unforgivable, and my relationship with those individuals will never be the same. But for the one or two who have disappointed us there have been so many others who have been there for us every step of the way. And actually so many that have surprised me with just how much they seem to care. People that you just wouldn’t expect to rely on in such circumstances – friends of friends, old work colleagues, people that I only know through the squares of Instagram! I’ve received some of the most kind and thoughtful messages from people I barely know, some whom I haven’t even met in real life!

I think it can be easy to assume that because we got to bring Frank home, that the second we were home all would be fine and dandy again. That because it all worked out ok in the end that we would just forget what happened. But the truth is very different. I’m not for one second comparing almost losing a child to actually losing one, of course I’m not. All I am saying is that even if the ending is a happy one, you don’t come out the other side unscathed.

There’s not a day that goes by now that I don’t say a little prayer and a huge thank you for the fact that Frank pulled through, but those few days that we spent not knowing whether he would or not have not been forgotten, and I don’t think they ever will be. I’ve changed as a person, I can feel it. Perhaps that’s just down to becoming a mum, perhaps it’s because of what we’ve been through. Most likely it’s a little of both.



Frank’s Story


Looking back, even only 6 weeks later, I have really fond memories of labour (weird, right?!). Mine was pretty straight forward (at least I thought it was at the time). I managed to spend a whole day at home while the contractions were manageable. I went for a walk, did some ironing, had several baths! Eventually at about midnight after almost 24 hours of contractions, they were coming 5-6mins apart and I decided it was probably time to go in. I was only 3cm dilated by the time I went in but they admitted me onto the ward anyway, I was lucky it was quiet!

A mere 8 hours later our beautiful baby Frank made his entrance into the world. We came home the next day, full of excitement and feeling like the luckiest people alive. The following day was Mother’s Day, we spent the morning in bed taking it turns to hold our baby boy, amazed at how perfect he was. The midwife came round to carry out the 3 day check and said all was ok. Later that afternoon our family came over and we proudly showed off our beautiful baby. I felt like life couldn’t get any better.

During the night Frank was reluctant to feed. He’d been feeding well throughout the day and was still only 3 days old so at first I just put it down to us not really having a routine yet and perhaps he was just a bit full! However when he wouldn’t feed all night I started to worry. That morning we took him into A&E. We spent an agonising 4 hours there and if I’m honest, were made to feel like silly new parents worrying about something so small. They talked about sending us back to the ward to work on a feeding plan which irritated me. I knew how to feed my baby, I had been doing it fine for 3 days. Something was wrong and I knew it. Eventually they did a blood test which showed that he had an infection. We were taken up to the children’s ward while they monitored him. The nurses reassured us that it was most likely something very minor as he looked and seemed well, but they carried out further tests anyway, just as a precaution we were told. The first of those tests was a lumbar puncture which was to test for Meningitis.

The next few hours are all a bit of a blur. Very quickly we went from worrying about a minor infection to being told our baby had Meningitis. He had a seizure while in the hospital, the most awful thing I have ever seen and something that will haunt me forever. He was rushed down to theatre so they could intubate him and we were told we would be transferred to a Specialist Intensive Care Unit at a hospital nearby. Our world came crashing down around us. Just hours earlier I couldn’t imagine being any happier, now….well there are no words to describe how it felt.

We were taken to the Doctors Staff Room while the Consultant explained the situation to us. Frank had contracted Group B Strep, which had led to meningitis. While the doctor was explaining all this to us I just sat there, staring into space. I was in complete shock. I couldn’t say anything. I couldn’t move. I couldn’t even cry. I just couldn’t accept that this was really happening. If it wasn’t for my amazing husband I honestly don’t know how I would have made it through that day, or the days that followed. He was so strong. Obviously equally as terrified, but just so much stronger than I was.

That first day in particular seemed to last an eternity. Eventually at about midnight we were transferred to Kings College Hospital and Frank was settled into their Intensive Care Unit. We were put up in a room in the hospital and told to try and get some sleep. That morning the Doctor explained that Frank had suffered more seizures during the night. The pain kept on coming. We just sat by his side feeling completely helpless, unable to accept that this was really happening.

That morning we met all of the many Doctors and Nurses that would be looking after Frank while he was in PICU. The consultant sat with us and explained the situation, she said we needed to take it hour by hour and should try not to think ahead any further than that. I watched as several of the doctors and nurses fought back the tears, I couldn’t fight mine. She told us that we were incredibly lucky that we had bought Frank in when we did, the situation could be entirely different if we had waited even just a few hours longer. It doesn’t bear thinking about.

Every hour in that place felt like a week. Our parents came up every day to be with us, we all just sat together watching him, hoping and praying and crying in equal measures. The nurses and doctors were amazing, explaining everything that they were doing and answering all our many questions. Our families forced us to take breaks, just stepping out to get a drink or to try to nap but we couldn’t bear to leave him. When we woke in the morning we were just so desperate to get back to him, we’d run down the corridor, anxious to hear how he’d been during the few hours we had been away.

The first few days were slow, there was no progress really. It was more a case of monitoring him and keeping him stable. We were working towards extubation but obviously they needed to be sure he could breathe on his own before they did so. Eventually, several days later, the time came to do it. It was terrifying and amazing at the same time. He responded really well, I’ve never felt so proud in my whole life. At just one week old our little baby was already proving himself to be one tough boy!

Once the breathing tube was out we were able to hold him for the first time since bringing him into hospital. The nurse passed him to me, I hated that I felt so anxious about holding him, but he just seemed so fragile now, and so very tiny. And there were just so many wires. Despite all this, finally being able to hold my little boy for the first time in days felt absolutely amazing. I must have held him for hours, not ready to put him down or even pass him to Chris. He seemed calm and content. It broke my heart that he had been through so much already and he was still so tiny.
The plan had been to move Frank out of PICU and into the High Dependency Unit once the breathing tube was out, but he seemed to be doing so well that the Doctors were happy to move us onto the General Ward. We were transferred to our local hospital that evening, just 5 days after being admitted. 5 of the longest days of my life, but really it was incredible the progress he had made in such a short time.
Once at our local hospital it was just a case of administering the antibiotics. We managed to get him feeding well, with a bit of persistence, so the NG tube was taken out. It was so lovely to see his little face free of tubes, even if he still had cannulas in every vein they could find! Eventually we got back to being able to care for our baby and I finally started to feel like a Mum. I was able to stay by his side in the hospital but only one parent was allowed meaning that Chris had to go home of an evening. I understand the reasons behind this but it was so hard being separated. It was hard on me being alone in the hospital at night but I think even harder on Chris who had to go home on his own every night, driving home with an empty car seat, seeing his little Moses basket by the side of our bed empty. The 10 days spent there were so much harder than I imagined. A week or so ago I would have given anything to be holding and feeding my baby, but I underestimated how difficult I would find the time there. The reality of what we had been through hit me while I was alone at night. During the day when Chris was there and we had visitors I felt positive and just so lucky, but by the time the evening came around and the ward was dark and quiet I couldn’t stop going over what had happened. I was scared to sleep incase anything happened. Everytime I closed my eyes, the image of my 3 day old baby having a seizure haunted me.

Eventually, 15 days after we took Frank to A&E, we were discharged. Bringing him home felt absolutely incredible. Even more amazing than the first time! The progress our little man had made in just 2 weeks was unbelievable. We have a long road ahead of us. 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. He’s still on medication to prevent seizures which I have to give him twice a day, but other than that he’s just doing all the normal things a baby should be doing. We have the first follow up appointment next week and then he’ll be monitored regularly to see how he is developing.

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, as best we can, to forget the nightmare, but all the while remember to be grateful.

We owe absolutely everything to the fantastic doctors and nurses that helped us get through this. The staff in PICU at Kings were so amazing, and equally the teams at our local hospital and the retrieval team that transferred us to PICU on that awful night. They saved our little boys life, how can you thank someone for something like that? There are just no words to express our gratitude.

I had never heard of GBS and had very little understanding of Meningitis before this experience, and I’m sure many others are the same. We don’t routinely screen for GBS in this country, and there are very few symptoms of the infection in Mum’s so it can be very hard to spot. You can however buy tests online and self test, I only wish I had known this. If you are expecting, or know someone that is, please take a look at this site which contains a lot of useful information as well as providing the test kits http://www.groupbstreptest.co.uk

I also want to post a link to the Meningitis Now website which contains a lot of support information but also information on spotting the symptoms.


Before this experience I thought Meningitis presented as a rash, but I now know that by the time the rash has developed it can often be too late. The symptoms can be difficult to spot, particularly in newborns when you may not be familiar with what is usual behaviour. However, I believe as parents we have a natural instinct to just know when something isn’t right. Always trust those instincts, I will be forever grateful that we did.

Finally, although nothing we do could ever be enough to thank them for what they did, as a small gesture we are aiming to raise some money to donate to the PICU at Kings. King’s provides outstanding care to some of the sickest children in the country who often come from all over the UK in an emergency. The work that they do every single day is truly incredible. We were so very lucky that Frank left the unit after just 5 days but many children are there for months, even years. For these families, the nightmare that we experienced for those 5 days is ongoing.

I know most of you reading this don’t know me personally but if you could find it in your hearts to donate, even the smallest amount, to this wonderful and worthy cause please take a look at our fundraising page.


Thank you for reading xxx