Sepsis: Hugo’s story WARNING: Contains a graphic account of our experience with sepsis and may be triggering for some readers.

This little face is the face of a sepsis survivor. This photo was taken of my son, Hugo, at nine months old, the day following one of the scariest 24 hours of my life. Although, if it hadn’t been for the cannula still in his arm, you would have never been able to tell, I had almost lost my precious boy the night before. I would like to tell you our story…the story I put off writing for years as, even now, it is still very raw and incredibly painful to talk about. But I share it with you now in the hope that it will raise awareness of sepsis and its early signs. With sepsis, time is of the essence and acting quickly can save a child’s life.

The signs of sepsis

Sepsis is a serious complication of an infection. BUT the infection is not always apparent. H had NO symptoms until an hour before he was rushed into resusitation. Without rapid treatment, sepsis can lead to multiple organ failure and death. The symptoms of sepsis in a child under five are:

  • looking mottled, bluish or pale
  • being very lethargic or difficult to wake
  • feeling abnormally cold to touch
  • breathing very fast
  • having a rash that does not fade when you press it
  • having a fit or convulsion

If a child has a very high temperature (over 38C (100.4F) in babies over 3 months or over 39C (102.2F) in children over 6 months) or a very low  temperature (below 36C <96.8F>), is finding it harder than normal to breathe or is making “grunting” noises with each breath (this was the only sign for H), has not had a wet nappy for 12 hours or is not eating and/or drinking, trust YOUR instinct and call your health provider if you think it could be sepsis. You know your child best and most healthcare providers take this into account. But if you are put on hold or sent home and you still feel your child is very ill and it could be sepsis, go to A&E (the emergency room) or insist on further investigations.

In addition, get help if a child has any of the following symptoms:

  • bulging soft spot on a baby’s head
  • “sunken” eyes
  • child cannot be encouraged to show interest in anything
  • baby is floppy
  • weak, “whining” or continuous crying in a younger child
  • older child who’s confused
  • not responding or very irritable
  • stiff neck, especially when trying to look up and down

Our story

It was July 2015 and my beautiful, healthy son was nine months old. He was such a chubby, happy baby and the object of our total adoration. Neither my husband nor I have any family living close by and we hadn’t been comfortable with leaving our baby with anyone we didn’t know well, so we had put off any kind of date night for the previous nine months. My mother-in-law has offered to come stay the night and babysit for us and we were finally ready for a fun night out with friends.

The day had been a normal Saturday of playing and cuddles and my active baby boy was happy and lively and ate and napped well. Nothing was unusual. He had not been ill and he didn’t have so much as a sniffle. My mother-in-law arrived in the late afternoon and, although I was feeling apprehensive about being away from Hugo for the first time, I carefully went through his bedtime routine, where all his toys were kept and what to do in case of an emergency and my mother-in-law reassured me that all would be fine and I that I should relax and have a nice evening.

As I was putting the final touches on my makeup and outfit with Hugo playing on the floor near my feet, I noticed he was making a funny noise. It was the slightest grunt with every breath. It was so subtle that I wasn’t sure whether I might be imagining it. I asked my husband if he could hear anything and he said he could hear a tiny noise but he wasn’t particularly worried as our son was otherwise acting well in himself.

As I continued to get ready I was unsettled by the noise…It just didn’t feel right to me to leave the house when something was a bit off so I decided to call NHS 111 (non-emergency medical help), hoping to put my mind at ease before we left. I was asked to take his temperature and at 36.8C (98.2F) it was normal. He didn’t have a rash and he didn’t have any other symptoms. We were told to keep an eye on him and to call back if anything changed.

I took Hugo downstairs and asked my mother-in-law to listen to his breathing. She could hear the noise too but also wasn’t worried as he had been happily playing and didn’t have a fever, although she did say that I should trust my instinct as his mother if I thought something was wrong. At that point I think everyone thought I was overreacting but I just couldn’t get rid of the niggling feeling that something wasn’t right.

By now it was time to leave the house or we would be late to meet our friends. That’s when Hugo sleepily laid his head down on my shoulder. He was such an active little boy and it wasn’t nap or bedtime so this was unusual behaviour for him. That made the final decision for me. I asked my husband to take us to A&E. We would call our friends to let them know we would be a little bit late. I was sure the doctors would check Hugo over, give him the all clear and we would be back to drop Hugo off and go out with our friends in no time.

I couldn’t have been more wrong. By the time we got to A&E, Hugo had become lethargic. I carried him into A&E with my husband by my side. We had been standing in the queue for around 30 seconds when a young nurse came over and said, “Come with me.” I was confused as there were still four or five people waiting in front of us. She immediately did some observations on our son and I asked what was going on. She said that he would be fine but she wanted the doctors to have a look at him and that she would be right back. She left the room.

The nurse had said Hugo would be fine and it didn’t seem right for both of us to miss our night out, so I told my husband that I was fine to stay with Hugo and that he should go meet our friends who were still waiting for us. He agreed, but said that I should call him straight away if anything changed. By the time he headed off it had been around an hour from when the grunting noise had started.

A short while later the nurse came back into the room with a couple of doctors and they took his temperature. It was now 40.6C (105F). He was very lethargic and his heart rate was through the roof. They took some blood and in their rush to get the sample, blood was sprayed all over me and my clothes as I held my baby boy. They pulled up his top and even my untrained eye could see the purplish pinprick rash all over his squishy little tummy. In my panic I asked if my baby would be ok and a doctor replied that he was in the best place and yes, he would be ok.

A bed was wheeled outside our cubicle and I was asked to get on it with my son. We hopped on and the nurses who were pushing the bed started to run. If it wasn’t for the rails on either side I think we would have surely tumbled right off. We went through the double doors labelled ‘Resuscitation’. Until that night I hadn’t spent much time in hospitals, but I knew that wasn’t good. When we arrived at our destination, I was asked to climb down and sit on another bed and hold H while the doctors worked on him – they told me that babies do best in these situations when they are close to their mothers. His little body felt so hot in my arms and his beautiful face was pale grey.  I was told that I should phone my husband and tell him to rush to the hospital as quickly as he could. My phone battery was dead so one of the kind nurses let me use her phone.

They hooked Hugo up to an IV and starting pumping him full of antibiotics and fluid. I heard a call go out for the most experienced doctors, who were currently working on trauma patients from a terrible car accident, to come straight away. I later found out that the accident victims were in critical condition…but my little boy was even more critical. A nurse told me that I should sing H’s favourite song to him and I started gently singing “Baa baa black sheep have you any wool….” into his little ear. As I looked down at my baby’s floppy body, the tips of his fingers and his pudgy little toes were starting to turn blue. I heard a doctor say he was going into cardiac arrest. Again, I asked one of the doctors whether he would be ok and this time I was told, “We are doing everything we can”.

I don’t remember much after that until my husband arrived. By the time he got there, things had worsened further. We hugged each other and I cried while I held our seemingly lifeless baby in my arms. A doctor came over and asked for our permission to insert a breathing tube into H as his breathing was deteriorating. He said that the outcome for babies in H’s condition that were intubated was generally very poor but there was little choice. Of course we agreed, what else could we do? They asked us to leave the room while they inserted the breathing tube. This was the first time I had been separated from Hugo since arriving at the hospital. We were in the tiny waiting room for less than a minute when we heard footsteps and a doctor came in. I could see several other doctors behind him. My whole body went cold and numb and I clutched at my husband and braced myself for the terrible news I was about to hear…I knew there was no way they could have inserted the tube so quickly.

And then the doctor smiled…and let out a giggle. I was so confused – what could possibly be funny? The doctor said that just as he was leaning over to put the breathing tube into our baby boy, he opened his eyes! And not only that, he had started smiling and laughing at all the doctors standing over him! The doctor said he had never seen anything like it! Hugo wasn’t out of the woods yet, but the antibiotics must have started to win the battle against the infection that was raging in his little body. He said we could come back in and be with Hugo straight away. I have never felt such relief in my life! My little blue eyed boy saw me as I walked into the room and smiled. I thanked the doctors so profusely for saving my baby’s life as they bundled us into the back of the ambulance. We were taken, with lights and sirens blaring, to intensive care at London’s Evelina Children’s Hospital, where we would spend the next 24 hours (still wearing our blood stained clothes!). The doctors and nurses there were so kind and wonderful and took such good care of us and thankfully Hugo made a speedy and full recovery.

Hugo was one of the very lucky ones. Outcomes from sepsis are often very poor and can range from loss of limbs to death. It was determined afterwards that my son’s sepsis was the result of pneumonia. He had absolutely NO symptoms of a respiratory infection prior to that evening. I lost a little of my old carefree self that night and am now a nervous wreck anytime my children are ill. My worst nightmare happened again a year and a half later when Hugo was two, but this time I knew the signs, got him straight to hospital and we avoided intensive care. He was tested for immune deficiency as it’s quite unusual to have sepsis more than once but thankfully everything was normal and he had been healthy ever since.

If there is anything I can say having been through this, it’s hold your children a little closer, tell them you love them and know the signs of sepsis. Save a life. Please.

One thought on “Sepsis: Hugo’s story WARNING: Contains a graphic account of our experience with sepsis and may be triggering for some readers.

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