Group B Strep Meningitis in Babies {Kate & Frank’s Story}

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.

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42 Comments. Leave new

Sending love and hugs. I have briefly spoken to you on comments on Instagram and so grateful for those posts. Knowing little Frank was doing well while we were in hospital with a similar situation really comforted me.

For anyone reading I also was Group Strep B positive, I tested privately and I had the antibiotics when my waters broke but my little one still managed to get an infection – however because of the antibiotics during labour and the fantastic quick response of the medical team we were treated very early on and in the Drs words ‘That test potentially saved her life’ 10 days in hospital was hard, lumbar punctures, antibiotics, hearing tests etc but worth it to know she was getting the best care.

I definitely urge any pregnant Mamas to at least consider the private test. 1 in 4 Mums carry it, that does not mean that 1 in 4 will have problems (hence why NHS don’t test) what happened for myself and my daughter was around a 1 in 100,000 chance apparently so please don’t think if you do test positive you will have problems! But if you do test positive and you can choose to be given preventative antibiotics during labour (you don’t have to have them, you can just choose monitoring). Xx

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Thank you Sophie. Hope your little girl is doing well now xxx

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What a roller coaster. What a relief to have your little family back together.

I asked about group testing when I was pregnant with Ophelia (rainbow pregnancy after NND of Alexandra) as I wanted to leave nothing to chance. My midwife said that the reason they don’t routinely test is because it can be there one day and gone the next so you might get a false positive/negative. She explained that as I was having a planned section that it was highly unlikely to happen as it it’s more connected with vaginal birth.

I think the rush to get families home means there isn’t enough time to check for the things that might take a little bit to develop. Try not to guilt yourself (easier said than done!) you’re doing a cracking job.

Your photos are lovely xx

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That kind of advice from midwives/health professionals is so misleading. It’s true that it comes and goes but in fact, a result should remain ‘true’ for approx 3 weeks which is why it’s done at 37 weeks in other countries/if done privately so the result at the time of birth should be accurate.

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Absolutely Fionnula – that’s my understanding also xxx

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Thank you Claire. As I understand it the result of the test is accurate for approx 5 weeks. So in other countries (most of Europe and USA) they would test at 35 weeks. The number of babies born with GBS infections is far, far lower in these countries xxx

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Ahh I didn’t know that – knowledge is power xx

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Thank you for sharing your story Kate, I had no idea about this as I hadn’t heard about it before so was very informative, I would definitely get a test, really useful to know. Lovely to hear your little boy is doing well x

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Thank you Nicola xxx

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Thank you so much for sharing and raising awareness as this is just so so important. A member of my extended family very sadly lost her beautiful daughter to GBS. I’m so glad Frank is safe at home with you xxx

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Thanks Lucy. I’m so sorry for your family and their loss. It’s just so awful. Sending lots of love xxx

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I am so sorry to hear what you have been through, it sounds terrifying. But so glad your little boy is ok.

There are a lot of myths/incorrect information out there about Group B Strep, it really is time for a change.

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You’re so right. There needs to be more accurate information available to expectant mothers xx

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This brought a tear to my eye, thank you for sharing your brave story I am so pleased Frank is doing well now. I am trying to conceive at the moment and I had never heard of these self tests nor aware of how it is transmitted. I will definitely now look into testing when I am expecting. Thank you x

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Thank you so much Sarah xxx

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I tested positive for GBS in both of my pregnancies but I was not given any treatment either time. The first time the positive test (which was carried out as a result of bleeding in pregnancy) was recorded in my notes (as an acronym) but no one told me and the midwifes didn’t read the notes properly until we were being discharged so the baby wasn’t monitored after birth. I was just told to contact a doctor if she seemed unwell or got a temperature (which thankfully she didn’t). With my second I tested postive again and
I asked the midwives multiple times about whether I should have antibiotics but they said they didn’t like to give antibiotics unnecessarily and my concerns were dismissed out of hand. We had to stay in hospital for 12 hours after the birth so baby could be monitored every 2 hours but we were then discharged without any further information. I wasn’t even given a leaflet of what to look out for. While I think private testing is a good idea it is worth checking with your healthcare team what they would do in the event of a postive result as I found their lack of action added to my stress about the birth.

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That’s awful Kat. I’ve been reassured that if we went on to have another baby, both myself and the baby would be given antibiotics – I assumed anyone that tested positively would! Glad both of your little ones are ok though xxx

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Having had friends lose a baby boy as a result of GBS infection, I was particularly anxious about it in both my pregnancies.

The first one I specifically asked my amazing midwife and she pushed through a test due to my experiences with our friends. It came back negative.

Second time around, GBS was picked up in a routine urine sample (they don’t do vaginal swabs for it in our trust) which meant it was a strong strain and can be symptomatic of a ‘common’ urine infection. I was treated immediately with a course of antibiotics. I then needed to have antibiotics IV every 4 hours before I delivered.

I had two lots IV when they thought I might go into labour then a third lot rushed through as my labour was very quick in the end! Afterwards they did extra newborn obs and gave me a leaflet of things to look out for. My baby boy is nearly 8 weeks now.

The problem with routinely testing is that GBS can be there one day and not the next so you can have false negatives which is more worrying than false positives. I think the important thing is to test if you want the reassurance but don’t assume you’ll be negative on delivery date and just keep an eye out in any case.

It’s such a scary thing but it is RARE for babies to pick up the infection. Nonetheless with my experience both friends and my own next time around I would still test and I think the midwives / consultant would recommend antibiotics just in case given my history.

I’m so glad Frank is okay and hope the future is bright for him and he’s not been affected by his being poorly. I can’t imagine how scared you all must have been. X

Ps LOVE the name!

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I’m so sorry for your friends Victoria. As I understand it, from speaking to several GBS support charities, the results are accurate for about 5 weeks. So they recommend testing at 35 weeks and that should give a pretty accurate indication of whether you will be positive/negative for the birth. And you’re right – it is very rare! It’s one of those things that you think will never happen to you, but I just think you can’t be too sure, I just wish I had known about it and that a test was available! xxx

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So glad you noticed something wasn’t right Kate – it must have been terrifying. I’m currently 38 weeks and have done some research around this as just happened to listened to a radio phone in when I was in the early stages. I’ve literally had no information from NHS/midwives which I think is poor – whether you test or not, the risks should be highlighted.

I was tested (negative) at 20 weeks due to risk of incompetent cervix but again, wasn’t really told what they were testing for – it was purely an acronym in my notes!

For anyone wanting more information I think Sarah Wickham’s book and website give the most “balanced” view as it’s certainly not straightforward.

Keeping everything crossed your future tests and checks are all good xxx

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It really was Emma, just the worst thing! I’m glad you were tested – even if you were not aware of it at the time! Thanks for the recommendation of the book and website, I will take a look xxx

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I’m so pleased your little boy is home safe, and thank you so much for raising awareness.
I watched ‘Dr Chris’ on This Morning years ago talking about GBS and had also never heard of it. What he said never left my memory about asking for a test if you found out you were pregnant. There was a lady on the programme with her child who had also suffered.
Fast forward to maybe 5/6 years later and I was pregnant. It was one of the first things I asked my midwife about. U fortunately she was very dismissive-“Oh it would have shown up in your first urine test, you’ll be fine. If you’re really worried you’ll have to buy a kit off Amazon, they’re about 20 quid” .As the pregnancy progressed (and my relationship with the midwife declined) it was on my mind more and more, I just couldn’t get that programme out of my mind. I spoke to another midwife at approx 7 months pregnant and she immediately said ‘No problem, pop down to the surgery this afternoon and we’ll get you tested’ So I did, and fortunately when the results came back, all was fine.
I had lost my first baby at a late stage and it was 8 years before I got pregnant (to the now gorgeous 10 week old Harry) so I was determined to do everything in my power to help things proceed as smoothly as possible. The midwife and her attitude didn’t help unfortunately. Let’s hope people continue to raise awareness about it.

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Thanks Anna, I’ve since gone back and watched that episode of This Morning – just wish I had seen it before!
I’m so sorry you lost a baby, how truly awful for you. But so glad to hear you now have gorgeous Harry now – enjoy every minute with him! xxx

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As a mum with a baby suffering seizures, blindness and multiple hospital stays i have an inkling of what you are going through.
Please be kind to yourselves and seek all the support you can. There are some amazing people out there that you don’t know exist until you are thrown into this dreadful world.

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Sending you lots of love Helen xx

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Thea Darlington
15th June 2017 11:57 am

My heart goes out to you. My son, Arlo, was diagnosed with GBS at 11 days old. I was lucky that the health visitor arrived not long after he stared to go down hill and got us to see a doctor straight away who referred us direct to the children’s unit so we didn’t have the wait that you did. The GBS had infected his blood only and hadn’t got into his spinal fluid fortunately. We spent a total of 6 weeks in hospital having antibiotics as after the first treatment the GBS had either returned or hadn’t gone. It was a long hard time for us as I have a 4 yr old as well and I was in the hospital the whole time. He is 10 weeks old now and doing well thank goodness. I had never heard of strep b before or knew what a horrible infection it could be. I am so glad that RMF has aloud you to use it to raise awareness of it. I wish you well for the future with your little one.

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I’m so sorry to hear this Thea. I hope Arlo is well now x

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I’m so pleased to hear that Frank is okay. What a horrible thing to have to go though. I live in Hong Kong and they test as standard, the results of which meant I had to give birth hooked up to an antibiotic drip to make sure Tommy didn’t get infected. I am really shocked that the UK don’t do this test as standard.

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Thank you so much Natasia – I’m so glad they test in HK and that you managed to get the antibiotics to prevent Tommy getting ill! xxx

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I had ordered a private test to do. However my midwife told me that as they had to do further testing on my urine it showed I didn’t have strep b and it was pointless paying for a private test. So I didn’t do it.
I was over my due date and thought my waters had broke, I went into hospital and they did a swab, 4 days later it came back I had Strep B. My midwife told me as it was only found via a swab and not in my urine test, I didn’t need antibiotics in labour. I contacted the Streb B helpline and they told me I definitely did need antibiotics in labour. Luckily I did get the antibiotics but I had to push, the midwives were surprised I was so worried about it. They were very dismissive of Streb B.
I would definitely advise women to take a private test.
So glad Frank is home.

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This was my finding too Rochelle, the midwives I saw were very dismissive of GBS even though I tested postive twice. I’m glad you trusted your instincts and pushed for the antibiotics.

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What a scary journey your family and your little man has had. I am so glad to hear he is doing much better now and on the road to recovery.

We have just had our second daughter 4 weeks ago and ended up spending the first two on the neonatal ward for GSB. I am especially grateful now after reading your story that this got picked up whilst already in the hospital. I dread to think what would have happened if we had come home.

To watch your baby look so poorly and to hear those words is every parents worst nightmare. Sending you all big hugs.

Xx

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I’m so sorry you’ve been through it as well Louise, it’s awful. But lucky they picked it up in the hospital like you say. Sending you and your family lots of love xxx

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A horrendous experience Kate, im so relieved to hear all seems well so far and fingers are crossed for more positive results in the future. Thank you for raising much needed awareness.

I too watched an item on ‘This Morning’ a few months ago about it and immediately texted 8 close friends who were all pregnant. Only 1 of them had heard of it.. but only because she found out she had it during her first labour and her baby contracted it (all fine now thank goodness). But it astounded me that none of my other pregnant friends (some who were on their 2nd or even 3rd pregnancy) weren’t aware.
I am currently 6 months pregnant myself and will insist on having the private blood test.

It’s worth pointing out, the NHS test is only 50% reliable at picking it up.
The private ‘ECM’ test is 90% reliable and if you have to pay, is only about £35.
….see video link from ITV This Morning here explaining it clearly: http://www.itv.com/thismorning/health/group-b-strep-what-is-it-and-how-to-test-for-it

FYI, out of the other 7 friends I messaged, 2 others had it after they were tested!!! Definitely get checked and spread the word to your pregnant friends!

Best of luck to Frank, Kate! I hope you can relax as time goes on and enjoy the roller-coaster of motherhood without anymore terrible scares X

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Hi Penny, thank you so much for your comment. Well done you making your friends aware of it – and I am so glad you will be testing too! xxx

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Hi, your story is very similar to ours. The midwife realised that Willow was poorly immediately after her birth so she was rushed away (I hadn’t even held her), and over the course of the next few days was diagnosed with sepsis and meningitis due to Strep B.
After 2 weeks we were allowed home and first the first two years of her life had regular vision, hearing and consultants appointments. So far she is smashing all her appointments, in fact we are off to one this morning where I hope we get discharged.
I do all I can to raise awareness (Although I sent my story in to RMF) about a year ago but chickened out and asked them not to run it! But I do tell pregnant friends and have spoken to my local MP.
Thank you for sharing your story and raising awareness. Hopefully it will stop more people going through what we’ve been through (and much worse). Big love to you and your little boy x

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I’m so sorry you went through this as well Rachel, it’s just awful isn’t it. But so pleased to hear that Willow is doing so well, that gives me so much hope! Hope the appointment went well this morning. Sending lots of love to you and your family xxx

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It did thank you! We’ve been officially discharged. Hope this gives you hope. Babies brains are amazing. 😊

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I’m so sorry you went through this as well Rachel, it’s just awful isn’t it. But so pleased to hear that Willow is doing so well, that gives me so much hope! Hope the appointment went well this morning. Sending lots of love to you and your family xxx

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My brothers 4week old baby has just been diagnosed in the last hour and going for a brain scan. Feeling sick with worry and just waiting for news. Glad your boy is doing well.

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Sending you lots of love Julie x

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Julie I’m so sorry to read this. I hope the baby is doing well xxx

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