It is little wonder the fear and anxiety surrounding Covid-19 is magnified in the Down Syndrome community. The words ‘it only affects the elderly and vulnerable’ have offered little comfort as no-one is able to explain if Covid-19 poses more of a threat to those with Down Syndrome. Compounding this has been the fear that maybe those with a disability would be treated less favourably if they required intensive care. In addition we have seen how Covid-19 can sweep through care homes where people with Down’s Syndrome sometimes live. There is concern and upset about interruption to schooling and services which have been hard-fought for. This is a melting pot of worry especially as many of the questions remain unanswered.
Here at The Foundation we are collecting case studies of those with Down’s Syndrome and Covid-19, so that we can share experience, evidence and expertise as appropriate and to ensure that those with Down’s Syndrome are not overlooked as this crisis continues to unfold. Here we share Claire’s story of her son Sid aged 7 who recently came home from hospital following admission for Covid-19. Sid is normally a vibrant and healthy little boy, full of mischief and bright as a button.
“firstly always seek medical advice if you have any concerns and go back to the Doctors if there is no improvement.”
There are several things to take from Sid’s story, firstly always seek medical advice if you have any concerns and go back to the Doctors if there is no improvement. It may not be Covid-19 but an equally concerning medical issue and we know acting quickly is always beneficial. Secondly, hospitals are safely able to accommodate the additional needs that having Down’s Syndrome may present such as arranging parental visits. Thirdly and perhaps most encouraging is that Sid was given the best treatment available and he and his family were treated with compassion and understanding. Please do share with us your experiences of Down Syndrome and Covid-19 as together we can build an important body of evidence.
‘I’ve heard I won’t be allowed to stay with my loved one though’
This is not true, please take note of the latest NHS guidance around staying with your child or adult loved one with Down’s syndrome:
“The only exceptional circumstances where one visitor – an immediate family member or carer – will be permitted to visit are listed…
You are a parent or appropriate adult visiting your child.
You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.”
What are we doing?
Together with Positive About Down Syndrome, The Foundation has launched a closed Facebook group for parents of those with a child who has a suspected or confirmed case of Covid-19 to provide support and to share knowledge. It is important the latest information is available to you and your healthcare professionals. Only in joint working can we truly be an asset to you and your loved ones.
Claire and Sid’s Story
“I had made the decision given the increasing number of COVID-19 cases in the UK to take all 3 of my children out of school on Wednesday 18th March 2020, before the Prime Minister closed the schools. Sid had a fabulous day the following day at home, with his brother; sister and grandad whilst Mark and I were at work. We were due to go away for 2 nights that night for a bit of a break, but given the situation, we agreed that Sid, James and Florence (Flo) would go and spent the following night with their grandparents so that Mark and I could sleep in and do some food shopping before the situation got much worse. Sid woke Mark and myself up on Friday 20th March 2020 by standing at the side of our bed and coughing. We just looked at each other and thought “great, 2 weeks of isolation for us!”
The cough sounded croup-like in nature, and Mark contacted our GP surgery for a telephone consultation. The GP phoned and advised us to “keep an eye on the situation and call back if we had more concerns”. By the Saturday, Sid appeared to be struggling more to breathe, and was coughing more so I contacted 111. After an hour on hold, I managed to speak to triage, who sent Sid’s details through to a clinician. They decided that Sid needed to be seen, and so we went to the OOH (out of hours) GP at our local hospital. The GP was great, and I was advised to contact them when I was in the car park so they could ensure they were ready with their PPE for us, which I did.
When we got into the hospital, we attempted to get Sid to wear a face-mask, however he point blank refused and became more and more distressed so they agreed that he didn’t need to wear one. The GP checked him over, and Sid was fairly concordant with this, other than not letting them to any O2 SATS. The GP couldn’t hear anything on his lungs, but said that she felt he was trying to fight off some kind of infection, although was unsure what this was at this stage. Sid didn’t cough the entire time he was there, but given my account, the GP prescribed 30mgs Prednisolone in case it was croup. I gave these to Sid when he returned from the OOH GP, and again we were told to continue to monitor the situation. Sid seemed to have some slight improvement over the next few days. However by Wednesday 25th March, Sid began deteriorating again. I had been attempting, a little unsuccessfully to work from home, but Mark was here also. He continued to deteriorate, and always seemed worse at night, so by the following day, his breathing got worse. Again I contact 111, and spent 45 minutes on hold. I was advised that a clinician would call back within 6 hours, however they called within 2 hours. The clinician was incredibly reluctant for Sid to be seen, until I mentioned that I was concerned he would deteriorate further and had previously been admitted 3 years ago with symptoms very similar for 5 days. They agreed that Sid could be seen by the OOH GP. At this appointment, the GP reported that she could hear a wheeze on Sid’s chest, and prescribed a salbutamol inhaler 2-5 puffs every 2 hours, and some oral amoxycillin with the advise that if he was not better in a few days to commence this.
Friday came, and Sid appeared to be struggling with his breathing at times. I contacted our GP surgery, and had a telephone consultation with them. They were not particularly concerned about the amount of work Sid was doing to breathe, but advised to commence the oral antibiotics. I was told by the GP that if Sid continued to deteriorate then to contact the ambulance service as there was little left they could do at this time. He had had 25 puffs of salbutamol in this time. By the evening, Sid was very tired. We put him to bed as normal, however his breathing became more and more laboured, and his respiratory rate was 35 breaths per minute. I made the decision to call the ambulance at 3.30am Saturday morning.
The ambulance arrived within 15 minutes, and the crew were incredible. They spent time with Sid to build his trust so they could complete his physical observations, and agreed that he needed to go to hospital. The paramedics had had a very tough shift, and I just wanted to give one of them a big hug, although I didn’t. Due to Sid’s laboured breathing, they placed him on 15 litres of oxygen. Sid was blue-lighted to hospital, although I’m not sure whether this was just for Sid’s benefit or not! We were met in the isolation part of A and E by 2 respiratory doctors, one of which looked very new and somewhat scared. A chest X-Ray was completed. Swabs were taken, and I was told that they would take approx. 48hrs to come back. They agreed that Sid would need admitting to the Children’s Ward, so we were taken down by a nurse and porter. The porter was very very worried about the lack of appropriate PPE he had.
We were taken into the isolated triage room for the Children’s Ward and was seen by a registrar who agreed that Sid did need admitting, and we were taken to a side room on the ward. The results of the chest X-Ray suggested Sid had pneumonia. I was told that I was not allowed to swap with my husband, but would be able to leave the ward for a short period of time to grab a coffee (the hospital Costa was still open!) and some fresh air. Sid required 1 litre of oxygen via a face mask, and had periods of time in air. His oxygen saturations were hoovering around 88%-90% (normal is over 95%). The Consultant reported that she would like his O2 SATS above 90%, and that normally it would be 92% but considering Sid’s Down Syndrome, they were aware that this could take weeks to achieve so would be happy with 90%. He was still on oral antibiotics, but they weren’t concerned about giving him any salbutamol.
Sunday came around, and I had popped out the ward for 10 minutes to grab a coffee before the Costa shut. Upon returning to the ward, a note was passed through the door asking me to telephone them. I called them, and was advised that Sid had tested positive for COVID-19, and that they would need to move us into isolation, and limit my movements. I informed the staff that this was not the most appropriate way to have informed me, and after some crying a junior doctor spoke to me through the window in the door. He apologised for how this was handled, and advised me that they did not think Sid would deteriorate any further. I was not prepared for what happened next.
Understandably, the staff requested that Sid wear a face mask whilst we were taken to the isolation pod. I had to hold this over Sid’s face who was becoming increasingly distressed. We were then taken through plastic sheeting into an isolation pod. Once Sid was in the room, and the face mask was off, he was able to tell me that I held something over his face and he didn’t like it. I asked to have some time outside of the room, but was refused. I told them I needed to leave the room and go into the corridor where I fell to the floor and broke down. They informed me that I would not be able to leave. I implored the staff to find a solution to this, as I would not be able to remain with Sid 24 hours a day for an indefinite period of time as I would need some respite from the situation. It was midnight by this point. They agreed to contact Infection Control for further advice. He was still intermittently on 1 litre of oxygen.
The following day, Monday 30th March, Sid was seen by the Consultant, who did not seem too concerned about Sid’s condition. I enquired about what would happen if I were now to become unwell, and was told that they did not know but would “cross that bridge when we got to it” – very reassuring! By the evening Sid’s work of breathing was moderate and he was placed on AIRVO (heated humidified high-flow therapy) 25 litres at 44% oxygen. The following day this was decreased to 35% but as Sid became more tired, it had to be increased to 50-55%.
By Wednesday 1st April, AIRVO was at 25 litres at 54%. Chest physio was needed, and Sid required repositioning on occasions to increase his oxygen saturation. Blood gases were done, which were PCO2 5.1 and PO2 7.5. He had mild work of breathing during the day, and oxygen increased to 60%. Throughout the night, Sid deteriorated further. He had moderate work of breathing, AIRVO was increased to 50 litres due to low O2 saturations, however this had little change to his presentation. Further chest x-ray was completed, saline nebulisers were commenced, as was IV co-amoxiclav. On-call physio contacted, who came and completed chest physio which seemed to help move mucus/fluid from his lungs. Birmingham Childrens Hospital was made aware, and a second cannula was inserted with talk of Sid being sedated, placed on ventilation and taking to Birmingham Children’s ITU if no improvement. Adult ITU consultants attended to review Sid, and miraculously, his saturations increased to 96% whilst they were in the room. The Paediatric Registrar told them they weren’t allowed to leave for fear that his saturations would decrease again!!!
Sid managed to pull something out of the bag during the day, and some improvements were made. The same nurse was on that night as the previous night, and was genuinely surprised to see Sid still there, awake; beating me at UNO; and engaging.
He continued to make improvements day by day, requiring a greater percentage of oxygen overnight when asleep compared to during the day. We also trialled Sid sleeping prone following some recommendations coming from adults ITU around the country for COVID-19. This worked to good effect also. We continued with chest physio, and repositioning when asleep when his saturations decreased.
On Monday 6th April, we were able to take Sid off AIRVO completely, and was on 2 litres of oxygen via a nasal tube. This was gradually reduced over the next few days and nights until he had completed 7 days worth of IV antibiotics, and was able to keep his O2 saturations above 90% both awake and asleep. He was discharged from hospital back home on Thursday 9th April.
Sid is suffering some after effects from his admission to hospital. He was very excited to be home yesterday, and I think overdone himself with going for a bike ride, bouncing around the garden, and generally being a happy active chappy! I think this also led us into a bit of a false sense of security as he has been quieter today, preferred to Sid on the sofa on his iPad. He did manage a short bike ride, but it was significantly shorter than yesterday. I think he is still processing what happened to him, and seems more unhappy today compared to yesterday. Behaviourally, he has been challenging, and will not let anyone touch him unless initiated by him. He has spent 12 days being poked, prodded and hurt whilst being held by us, with people telling him that it will make him better. We have a long road to recovery ahead of us, but at least he is home with his family.
I have been advised that due to the level of intervention and length of his hospital stay that Sid will be followed up by a Paediatric Respiratory Consultant.”
A big thank you to Claire and Sid for sharing your story!