“From birth Amelia had suffered a slight eye infection.
We were told that this would clear up as it was nothing to be concerned about and that she was a perfectly healthy baby.
“On Thursday 6 December 2018 we started the day like any other with no concerns and completely unaware that our worst nightmare was about to happen.
“Mid-afternoon I attempted to wake Amelia for a feed as she hadn’t woken herself like she usually does. She was hard to wake and wasn’t interested in her bottle, she kept crying and wincing which was extremely unusual for her. I just couldn’t settle her. They always say a parent’s instinct is the best and I just knew that there was something not right with our gorgeous girl, the usual happy, quiet baby was so unsettled.
“Amelia screamed for four hours, until we eventually got her to sleep in her Moses basket. When 11:30pm came I took Amelia upstairs ready for bed. Nathan and I tried to wake her for a bottle and a change, but she wouldn’t wake properly. Her eye that had the slight infection in it was oozing, and initial panic and worry set in.
“Amelia still wouldn’t take any of her milk. I rang the hospital whilst Nathan tried to settle her. I explained Amelia’s symptoms over the phone and they advised me to ring 111. They told us that they were going to send an ambulance. I told them that we could take her to the hospital ourselves. They advised me not to do this and to wait for the ambulance. We waited for nearly six hours with a very poorly baby for the ambulance to arrive. By this time Amelia had gone 14 hours before we managed to get her to take some milk and for a 4-week-old baby this is far too long.
“When we eventually got into the ambulance, they checked her over and everything was looking fine, heartrate, temperature, responses were all fine. They told us that she was probably just coming down with something or just unsettled. As new parents this made us feel as though we were just wasting the time of the emergency services.
“We arrived at Blackburn Children’s A&E. The first doctor we met wasn’t concerned with Amelia’s eye but told us that he was extremely concerned with how irritable and unsettled she was. They checked her blood sugar levels and these were very high compared to normal. They rushed us straight upstairs to the children’s urgent care, where we were surrounded by doctors and nurses, all taking bloods, and trying to get a cannula into her.
“Amelia’s temperature suddenly shot up and she was very lethargic. The head doctor took her straight off us and rushed her for a lumbar puncture. This is what gave the doctor the suspicion of our worst nightmare. The fluid taken from her spine during the lumbar puncture for a normal result should be clear like water, but Amelia’s was very cloudy which is the first indication of meningitis.
“More bloods were taken, with a worrying and long wait of 48 hours to get the results back. They instantly started her on strong antibiotics to treat the worst case of meningitis to try and stop her from deteriorating any more. Amelia was hooked up to a machine pumping the strong antibiotics into her tiny body, four times a day. Amelia still wouldn’t feed very well, a feeding tube was put up her nose and into her stomach so that she was getting enough fluids without having to work to drink it. She was so weak she didn’t have the energy to do something so natural like drinking her milk. Amelia didn’t like the feeding tube as she pulled it completely out twice.
“Due to the strength of the antibiotics that Amelia was on and how small her veins were the cannulas kept tissuing, resulting in her having to constantly go through the procedure of having more cannulas fitted. Four cannulas tissued before she eventually had a long line fitted in her arm and this had to be followed up by an x-ray. This got taken out three days later as it became swollen and infected.
Antibiotics three times a day
“After testing the type of meningitis that Amelia had and testing the antibiotics against the bacteria, the doctors cut it down to antibiotics three times a day. She had another long line fitted on the Tuesday into her scalp followed by another x-ray. It was confirmed that Amelia had E-coli meningitis.
“We were given our first home leave on 15 December. We had a few hours during the day at home but stayed at the hospital each night. The second long line was taken out on 20 December as it became swollen and painful, a risk that couldn’t be taken with it being in her scalp.
“Amelia’s first Christmas present was being allowed home leave. We travelled back to the hospital at midnight for her antibiotics and then we were allowed straight home so that Amelia could wake up at home for her first Christmas with her family. We carried this on every night, travelling to Blackburn hospital at midnight and then home. The community nurses came each morning and afternoon to administer her daytime antibiotics.
“Amelia had more cannulas in her feet, hands, head and arms. The 27th and 28th were overnight stays at the hospital again (which we didn’t mind as the end was in sight.) On the 28th they carried out blood tests which confirmed that the meningitis had gone. Her last dose of antibiotics was administered on 29 December and following this we were discharged from hospital and all treatment.
“Ready for the New Year as a family. Our nightmare was over … so we thought.
Healthy, smiley baby
“The following days after Amelia’s discharge were great. She was a healthy, smiley baby. She gained a healthy 2lbs by 2 January, but just four days after being given the all-clear, Amelia became extremely poorly again, After ringing for an ambulance and being told that she will just have a bug and that they weren’t classing her as an emergency they couldn’t get to us for another three hours.
“We rushed her straight back to the hospital, a cannula was instantly put straight into her hand and another lumbar puncture was carried out. Unfortunately, this was unsuccessful. Amelia’s breathing became really shallow and at one point she stopped breathing. Being in a room when your daughter is so so poorly and suddenly stops breathing, even if it is only for a second, feels like the longest and scariest point of your entire life. A breathing monitor was put on her to monitor her breathing pattern and check for any irregularities.
“After a few hours we were transferred back down onto the children’s unit on high dependency. We were told that the doctors were extremely concerned about Amelia and a close eye needed to be kept on her. The following day another lumbar puncture was carried out. This time it was successful and confirmed meningitis again. Amelia was taken down for a chest x-ray and had another cannula fitted into her head.
“The following day she had an MRI scan of her head and spine, and they inserted another feeding tube. The following morning another cannula was fitted into her hand after the one in her head had tissued. The blood results came back confirming the same strain of E-coli meningitis that she had previously been treated for, but the infection rate was at a higher rate than last time.
Lengthy process of treatment
“We were told that Amelia would need to be transferred to Alder Hey or Manchester Children’s Hospital as a day care patient within the next few days, to have a more sustainable cannula fitted under anaesthetic as it would be another lengthy process of antibiotic treatment. On 6 January we found out that as well as the E-coli meningitis Amelia also had sepsis of the bloodstream. The cannula that was in her hand tissued again. The doctors had four failed attempts at fitting a new one before they were successful at fitting another one into her head. This came out again early morning on 9 January and another was fitted into her foot. We were still waiting to be transferred to Manchester (two days of waiting).
“The cannula in her foot came out on 10 January resulting in her missing her antibiotics. We were transferred to Manchester Children’s Hospital later that afternoon. I was told that Amelia would go to theatre that night around 7pm and had to be nil by mouth. This got cancelled and rescheduled for the following day. A temporary cannula was fitted into her head and she was on another six hours of nil by mouth, ready to go to theatre at 8am but she didn’t go down until 9:30pm. By the time that Amelia went to theatre she hadn’t had a bottle in over 23 hours apart from a very small amount of dioralyte (nowhere near enough to fill her) and she had been left in a cot with blood-stained sheets from them putting her cannula in. I asked many times for a clean sheet but it never came. Stethoscopes and bandages and packets were also left inside her cot. I still wasn’t allowed to feed Amelia when she came back from theatre or overnight. By the time I was eventually allowed to feed her she had gone 32 hours without a bottle.
“Amelia had a breathing monitor on for a while following her surgery. When this alarmed I automatically worried and buzzed for a nurse, but no nurse came for over two hours, Luckily it was just a false alarm. The line that she had fitted in Manchester was supposed to last until the end of her treatment but came out one week later. She had another cannula fitted which again came out one day later. Amelia had run out of veins.
“After a very difficult, emotional and gruelling week of feeling completely helpless to our beautiful princess in Manchester we were finally allowed back to Blackburn Hospital. The dosage of antibiotics was to continue for her treatment. After a week we were allowed home leave with Amelia again, yet still nothing seemed to go to plan or right for her. Doctors at Blackburn had to carry out another lumbar puncture to check her spinal fluids. After many failed attempts it was decided that Amelia’s spine needed time to heal and that this needed to be done under anaesthetic.
Transferred back to Manchester
“On 29 January, unfortunately Amelia had to be transferred back to Manchester at 4:30am due to her mid line that she had fitted the first time had tissued and there was risk of infection, Doctors tried their best to insert a temporary cannula but after four failed attempts had to stop, as well as failed attempts at administering fluids. It was a matter of urgency to get her to Manchester and into theatre to have a surgical line fitted as she was missing vital doses of antibiotics. Amelia was nil by mouth again waiting for a slot in theatre. When Amelia came back from theatre the surgeons had luckily been successful in fitting her surgical line as well as carrying out the vital lumbar puncture that she needed. Unfortunately, Amelia woke up before the MRI could be carried out.
“Eventually Amelia had the MRI scan. We just had to wait for the results from these tests and scans to come back. We were desperate to get back to Blackburn and see daddy. When the results came back, we were told that Amelia still needed a further three weeks of treatment. We eventually arrived back at Blackburn on 2 February to continue with her treatment. After a few days back in Blackburn we were allowed home leave again, but had overnight stays at the hospital every night, just coming home during the day. This continued for the following two weeks. Then on 20 February Amelia had to go nil by mouth again to be sedated for another MRI to check that the infection around her brain had decreased. These results were sent over to Manchester for a review. On 19 February Amelia had an audiology appointment to check that the meningitis hadn’t affected her hearing in any way. Luckily there was no problems detected.
“On 20 February the doctors carried out a repeat lumbar puncture and MRI. This was the second lumbar puncture that I had been in the room for, as they don’t usually allow parents in the room when this is being done. Standing and watching your tiny baby being shaped into a tight ball position whilst awake and fluid being extracted from her spine is just possibly one of the worst experiences to watch your child go through, the moment of feeling so helpless as they look at you through tears and screams wanting you to help and take it all away from them. Following on from this Amelia had another week of home leave and hospital stays whilst continuing her antibiotics.
Most amazing news
“On 27 February 2019, the community nurses came and administered her morning antibiotics as normal. Amelia, mummy and daddy went out for a nice family walk before setting off home ready for the nurses to come and administer her afternoon dose. We then received a phone call with the most amazing news we could ever wish for. The final results from the latest tests carried out showed that Amelia was finally clear from meningitis. The following morning we made our final trip to Blackburn hospital to have her cannula removed and bloods taken.
“After what felt the longest, most agonising, most stressful and emotional three months of our lives, with constant hospital treatment at Blackburn Hospital, strong antibiotics three times a day, battling E-coli meningitis twice as well as sepsis, over 20 cannulas fitted in every part of her body, numerous cannulas, two long lines, a mid central line as well as pic line, an ultrasound scan, four chest x-rays, four MRIs, nine lumbar punctures, an audiology appointment and two horrendous trips to Manchester, the doctors were finally able to give us the results that we had been hoping for. Our beautiful warrior princess was finally free.
“On behalf of Nathan and myself, our family and our amazing warrior princess we would just like to thank each and every nurse, doctor, student and ward staff at Blackburn Hospital children’s unit for their dedication and work put into making Amelia better. We could not ask for a better team to treat our daughter as well as supporting us as a family in the most difficult time.”