Coping with COVID – family’s stories of living with a child with trisomy 13/18
The views expressed in this article are the opinions of the families interviewed and do not necessarily reflect that of SOFT UK or the writers.
We all experienced change due to the impacts associated with the Covid-19 pandemic. During almost two years of lockdown, we had to adapt to the fear associated with spreading a potentially lethal virus. We all have unique thoughts, feelings and stories associated with our experiences. What is interesting is that no matter who you ask, you will find similarities and differences between us all. The variability of our experiences means that there are many stories to tell, and many learnings to take from them. Listening to the stories of people can provide insights and understanding into how unique situations can cause different experiences. In this article, we explore how the Covid-19 pandemic impacted the lives of families caring for a child with either trisomy 13 or 18.
Katy’s story
Katy and her husband Matt have three children: their eldest Emily is eight, Joshua is five and Harry is three. Joshua lives with partial Edward’s syndrome. During the COVID pandemic, Katy’s family had to take extra precautions which had its challenges but ultimately brought the family closer together.
Joshua received his diagnosis at 2-months old
When Joshua was born, he was not doing the usual things that you would expect from a healthy child. He was presenting with a high fever, a weak cry and blue skin, but the midwives reassured Katy and Matt that this was attributed to the fast delivery. After two weeks, Joshua developed bronchitis which prompted a visit to the hospital. The doctor conducted several medical tests and discovered a couple of things wrong – a diaphragmatic hernia and an atrial septal defect (ASD). Genetic testing confirmed that Joshua had Edward’s syndrome. Katy could not help feeling relieved about the diagnosis, however after Googling the syndrome, she was a little worried, and with little prior knowledge of Edward’s syndrome she was concerned about what the future held.
Lockdown had an impact on Harry’s social skills
When COVID-19 struck, Katy’s family, like any family living with a vulnerable child, was advised to shield. Both parents had to adapt their jobs, as they were previously working in a hospital, so they took on different roles that allowed them to work at home. Initially, they opted for the safest option and did not leave their house for three months. This long period of isolation had a great impact on their youngest, Harry. Being only one year old at the time it was such a crucial time in his development. The impact on Harry’s social skills was most prominent after the lockdown and brought Harry feelings of anxiety when he faced social situations from going to the shops, to socialising with other children his age. After the COVID-19 restrictions had eased, Harry’s nursery teacher reported concerns about Harry’s delayed speech development and recommended speech and language therapy. Juggling working from home, home schooling Emily and Joshua and taking care of Harry was not easy. The parent’s sensed that Harry felt ignored and left behind, as he had not had the same upbringing as his elder siblings, and he was missing out on core memories such as interacting with his grandparents and socialising with other children.
Adapting to having the children at home and teaching
To continue her education, the school sent learning resources and tasks for Emily to complete at home. The one-on-one teaching with Emily was incredibly time-consuming, and Katy and Matt found themselves exhausted, spending any breaks in the day from their job trying to help Emily with her homework. After some time, Emily began to feel a little restless and found the materials being sent from the school repetitive and non-engaging. In addition, the lessons required one-on-one teaching and finding the time was very challenging. Katy started to develop some materials that were adapted to Emily and made some of them in the form of games to encourage Emily to learn. Joshua is very sensory and loved to watch baby sensory programmes with Harry. Despite both Katy and Matt being key workers, the school would not allow their children to be in school because they were able to work from home. Their neighbour, who also had a child living with a rare condition, had a very different experience and was able to have their children back in school. Despite the challenges of having all their children at home during the lockdown, Katy does not regret the decision of shielding and staying at home to protect Joshua the best she could.
Being in lockdown brought the family closer together
In some parts of the lockdown, the weather was great, and the family would spend their time out in the garden with the paddling pool out. Some beautiful memories were made and once restrictions eased a little the family would go on some lovely trips to the beach. Emily had hardly noticed the lockdown and enjoyed all the extra family time.
Aisling’s story
Aisling Roberts is a mother to four children; the youngest, Darra, is eight years old and lives with mosaic Trisomy 18. She talks about how she wanted to keep her family life as close to normal as possible throughout the COVID-19 pandemic.
COVID-19 impacted Darra’s care and delayed important hospital appointments and follow-ups
With Aisling working as a nurse specialist in the general hospital she has many contacts that could aid in Darra’s care. Despite this benefit, all of Darra’s cardiology appointments had to be pushed back due to COVID-19. An appointment was made for summer 2022 but had to be pushed back again due to the backlog, leaving Aisling waiting for an appointment. Their routine GP appointments and paediatric reviews however were done virtually which didn't have a negative impact on Darra’s quality of care.
Smaller class numbers helped build Darra’s confidence
Aisling saw positive impacts of the reduced class size on Darra. With fewer children in the class, Darra was able to build more personal relationships with her classmates, and with this new exposure, her confidence around new people began to grow. Developing deeper relationships with her classmates brought out a very attentive and caring side to Darra. The lockdown also allowed the family to spend some quality time together. The Roberts family formed a bubble with their neighbours which meant the children were able to play games and socialise with other people outside of their family. A lot of time was spent at the family allotment where the children learned about gardening and planting vegetables, this allowed them to be one with nature.
Libby’s story
The fear and anxiety of Covid-19
While isolating, both Libby, her husband and their eldest daughter caught Covid on separate occasions. This built up a lot of anxiety and fear for Libby. “I was petrified about how her body would react because she has a lot of underlying issues”. Fear and anxiety grew over the potential of Sophie’s condition worsening if she contracted Covid-19. Libby’s fears developed with concerns about there not being enough ventilators, especially with the news of shortages in the US.
Covid-19 vaccination
During the time of Covid-19, Sophie suffered from epilepsy which caused seizures that stopped her breathing. It took a long time to find a medication cocktail that worked. Libby had read research that showed that the vaccine can worsen the seizures associated with epilepsy. For this reason, they chose to not have Sophie vaccinated.
The whole family affected
For Libby, Covid-19 made things “a hundred times worse” than they were before and was an ‘absolute nightmare’. Jamie, the family’s second child requires one-to-one teaching at school. Due to the lockdown, these one-to-one sessions had to stop, and all teaching moved online. Although for Jamie this appeared as a good thing, as he has a lot of anxiety about school. For Libby this generated a lot of worries. Due to her role as a full-time carer for Sophie, she didn’t have the time to give Jamie the educational help that he needed. Libby felt that carers and families of children with additional needs were forgotten about and not provided with the support they needed. Not being able to socialise at school was tough on Libby’s eldest daughter, who developed anxiety from staying at home and found it very difficult to isolate.
Written by Lydia Bown and Ethan Maughan