At just under 3 years old, my son developed a croupy cough with no fever or other concerning symptoms, so we carried on as usual. On day 5 of the cough, his cough developed a strider quality so I took him to his PCP. At the time, his oxygen level was normal and his lung sounds were good except for the cough. He was started on steroids and sent home.

The following day he had improvement in the strider but began running low grade intermittent fevers. He continued to eat, drink, pee, poop and appear as expected. When I woke the following day but later than Carl’s usual 6am wake up call, I ran into his room and found him lethargic, working hard to breathe and had very high fever.

He’d never had a fever that high before, I medicated him and contacted his doctor. We both hoped his breathing effort and lethargy would improve with reducing his fever. When I listened to his lungs, they were clear but his oxygen was low. After his fever had reduced, there was no improvement with his breathing so we went to see his doctor. He was given some breathing treatment and blood test were done. After 2 breathing treatments, the lungs sounds became very concerning, his breathing did not improve and his blood work showed he had a bad infection. So we went to the ER.

In the ER, Carl was diagnosed with RSV pneumonia and asthma. Before being moved to the regular hospital room on the standard paediatric ward, I requested for respiratory therapy and for someone to come and check on him again. He was put on high flow oxygen and moved to the paediatric intensive care unit. We spent 11 hours in the ER before he got there.

On arrival in the ICU, he was immediatley put on a BiPAP which failed to help him breathe, so he was intubated, which also failed to improve his breathing. He was then put on an oscillator which also failed to improved his breathing. During the first 4 hours in the ICU, he was put on VV-ecmo. He continued to deteriorate cardiacly and was placed on VA-ecmo. He continued to deteriorate and was given an atrial septotomy with stent (a large hole was placed between the atria of the heart) to reduce the strain on the right side of the heart, a drain cannula (VA-V) was added and he was put on an adult ECMO pump as he had already maxed out the peds pump.

He developed a disseminated intravascular crisis in which he lost all the blood parts. He received numerous transfusions of red blood cells, platelets, plasmas, and cryo. His INR peaked at 6.6, normal is 1.

Along with DIC, he developed pulmonary edema, total opacities, complete biventricular failure (he had no heart beat or breath sounds) liver failure, ischemic bowel with multiple bleeds, kidney injury, and ischaemic injury to both legs.

After 14 hours, he was given a broad spectrum antibiotics and was later diagnosed with MRSA pneumonia.

2 weeks later his heart function resolved and we were able to stop the VA-ecmo. The following 4 weeks were on a VV-V ecmo. We had to place a trach and he was eventually able to wean off ecmo.

We spent a total of 106 days in the cardiac ICU and after amputations and skin graft surgery we were able to go home. He was still trach/vent dependent, required tube feeds and extensive wound care. He was also still on withdrawal medications from the sedation meds he had been on.

He was able to wean off the trach and feeding tube (6 months for each) and he’s able to walk, run, climb and play with his peers today.

We are blessed with an almost able-bodied little boy. He has issues with chronic wounds on his salvaged foot and stump and he’s had some bone infections and surgeries because of it. He also has permanent lung damage, but it only seems to be a problem when he's sick.

The horrors of sepsis will plague me the rest of my life but I have some comfort knowing these are memories my son will have little of. Being so young had its blessings.

I will also forever be humbled by the resilience of children. Never in my life have I seen such joy despite illness and loss.

Hug your babies and be grateful for every day.

The article above was written by Catherine Clark and is shared here with her explicit consent. The views in the article do not necessarily represent those of the Global Sepsis Alliance. They are not intended or implied to be a substitute for professional medical advice. The whole team here at the Global Sepsis Alliance and World Sepsis Day wishes to thank her for sharing her son’s story and for fighting to raise awareness for sepsis.

Carl’s Sepsis Story: A Journey of Resilience and Recovery