Together for Short Lives
Call the Helpline 0808 8088 100

Life in lockdown when your child has complex health needs

News and comment

Like much of the nation, I sat waiting, with bated breath, for the Prime Minister’s announcement on 16 March. He explained that those with the most serious health conditions would be expected to shield from social contact for the following 12 weeks. Panic set in as I considered the implications, terrified at the enormity of keeping my son safe from this deadly disease. Hugh, my youngest son, has a rare genetic disorder called FOX G1 syndrome, profound and multiple learning disabilities and life-threatening seizures.

Finding out if he was most at risk wasn’t straightforward. It was weeks before the official shielding letter arrived. I called consultants, doctors, nurses – anyone and everyone involved in my son’s care, to get clarification but many seemed as confused as I was. Some never returned my calls. My best source of advice and information came from other parents online. Confused and terrified, I made the decision to withdraw Hugh and his older brother from school.

Once the front door was shut to the outside world, I felt safer. The shielding letter enabled us to access the shopping delivery slots and each week I’d carefully disinfect every item in the hallway before bringing it in to the house. We cancelled our carers and took responsibility for Hugh’s 24-hour care needs ourselves. It was exhausting at times but I was too scared to allow anyone else into the house.

My fears were two fold: What if Hugh gets Covid-19? Colds and simple childhood illnesses have left him fighting for his life. And what if my husband and I do? Who will care for Hugh then? In desperation, I rang our hospice hoping that they would be able to take him in should I be unable to look after him. I began training Hugh’s 11-year-old brother to use the hoist, to set up tube feeds and change his feeding button. I sat down and typed a detailed plan covering all of Hugh’s medical needs, his allergies, his medications, how he communicates. In bold, capital letters I typed: ‘Hugh is for full resuscitation. He has a life worth living,’ as I was terrified by the media suggestions that learning disabled people would be denied life-saving medical interventions.

Lockdown 2 was different. Hugh had been ‘downgraded’ from clinically extremely vulnerable to just vulnerable and was no longer required to shield. There were some mixed messages from the medical professionals involved in his care, but I was encouraged to send him back to school. I embraced the decision. Without the correct equipment at home, we had not been able to keep on top of his physiotherapy during the first lockdown and his physical development was impacted adversely. At school he could access the equipment and therapies we had been unable to provide. His return to school however, was delayed, by unclear and conflicting advice about aerosol generating procedures (AGPs). Once risk assessments were completed Hugh returned on a part time basis and continued to do so, on the advice of is consultants, throughout the second lockdown.

Lockdown 3 feels different again. Once more there is uncertainty about whether we are required to shield or not. We’ve had differing advice from professionals so I’m awaiting further clarification. As I’m a keyworker, Hugh could be in school, but following a recent hospitalisation for pneumonia, I’m reluctant to send him back just yet. This lockdown, we’re allowing carers into the house. Without them, it would be impossible for my husband and I to continue working. They’re in full PPE and carry out twice-weekly Covid tests, which is really reassuring. I’ll also be having Covid tests at work which means I’m less anxious about inadvertently bringing the virus home to Hugh.

I’ve felt a lot of fear and anxiety these past 10 months, exacerbated by the sometimes conflicting Government advice. I’m grateful for the parents and carers, in similar situations, who have been an immeasurable source of advice and support throughout. I’m also thankful for the professionals who have tried their best to guide and help us through an unimaginably difficult year.

Leave a comment