Danie’s family caught Covid in February 2022. The children’s symptoms were pretty mild, and “after a day they were fine and back to normal.” One month later, however, Danie says that they noticed a mark on their daughter’s leg, which they took a photo of and sent to family members to see if they knew what it might be. Danie’s brother thought it looked a bit like a tick bite, but Danie explains that they had been isolating, and hadn’t been anywhere much.  They phoned 111 due to being unable to get through to their doctor’s surgery, and got an appointment at the local hospital. Since then their daughter has been diagnosed with ITP (immune thrombocytopenia) which is a condition that causes bruising and bleeding due to low platelet levels in the blood. Danie was interviewed in June 2022.

After running tests at the hospital, doctors concluded that their daughter had ITP (Immune thrombocytopenic purpura), an immune condition which causes a shortage of platelets and therefore bruising. Danie and her husband were then told, “what ought to happen after three months [is] the platelet levels should rise to normal.” Their daughter had her blood tested once a week to monitor the situation. But blood platelet levels did not rise as expected – “they kind of fluctuated around the same point, dipped a bit, rose again, dipped a bit again.”

Later, the situation deteriorated, and Danie was told that if her daughter’s platelet levels dropped any lower, then they would probably have to admit her to hospital. They advised that should their daughter hit her head or another part of her body in her current condition, there was a risk of her having, “internal bleeding that wouldn’t stop.”

Danie says that doctors did mention to them that, “they have seen a link between viruses such as Covid causing a dip in the platelets.” The doctors also explained to the couple in layman’s terms what happens to the platelets. As their daughter did not have ITP before catching Covid, the doctors think Covid might be the cause, they said, “it’s difficult to tell for sure, but it would seem that this is the case.”

Danie says that her daughter does not have a formal Long Covid diagnosis, and that she is not sure “who that would come from.” They have had no contact with Long Covid clinics, or with other parents with children with Long Covid. Doctors have said that ITP would be “a form of Long Covid” but Danie says that they have not had anything in writing about it.

Danie says that her daughter “hasn’t been ill” and is generally quite an energetic child, but she is “very up and down.” She has these visible bruises all over her legs, and she is at that age where she is kind of conscious that “people will notice it at school.” Danie recalls that when the hot weather hit her daughter was excited about wearing socks to school, but then she said, “but then people will see my bruises.” Danie then had a talk with her daughter about what she can say to others who seemed curious or who might be mean about it. She says she also told her to let the teachers know if it does happen.

Danie says that her daughter is quite a cautious girl and is good at spotting danger, which she finds reassuring. There is still a risk of other children knocking in to her, however. The couple have been adapting by way of preventing harm and being more cautious about their children’s activities, for example both children now need to wear helmets whenever their go on their scooters or bikes, and no longer going to adventure playgrounds. School have also been notified and are “aware of what they need to look out for,” and Danie has found this extremely helpful.

Danie has been taking her daughter to hospital once a week. She is a freelancer, so she has been able to make the hospital appointments, but it has meant her working evenings, or missing out on jobs entirely. This has had a financial impact on the family, as well as making her feel very tired. Danie’s husband’s job is less flexible; he needs to work at the office as well as at home, and sometimes finds himself looking after their two year old son whilst home working. Their daughter’s schooling has also been affected – she now misses every Thursday morning due to weekly hospital appointments. Danie has asked the school to fill her in on what she has missed, so she can try to make up for it.

Danie asked the health professionals whether there was anything else holistically that they could do to help their daughter’s health. They said that at this stage, “there’s nothing much,” to which Danie disagreed, saying, “what you should say is ‘eat your vegetables’.” They have tried to introduce more vegetables to their daughter’s diet.

Danie says that her daughter’s health condition has affected life with family and friends, because they have noticed when their daughter has a cold it can exacerbate her symptoms, so they avoid meeting up with extended family. They also have some worries regarding grandparents having a more “relaxed” attitude when looking after their grandchildren. Child care options are more limited now, because they want to be certain that whoever is looking after their daughter is “fully aware and capable.” It has also affected family holidays, because they want to be reassured that they can access healthcare when needed.

The pandemic impacted on Danie’s family support and social life, with other family members being unable to see or look after their son, who was born just a month before the first lockdown. Danie’s grandfather was having chemotherapy, leaving him vulnerable, and Danie’s brother is “high risk” and lived with their mother, which meant that they had no support. Danie’s grandfather passed away one year ago, and since then she has been trying to support her grandmother, who “lost her daughter, her son, her husband and her brother to [Covid].”

Danie said her daughter’s school was assertive and adaptable in responding to her changed needs. They were understanding about absences from school to attend hospital appointments.

Age at interview 38

Danie was frustrated that she couldn’t take her daughter straight to a children’s hospital, instead having to go via Accident and Emergency. This process put her off seeking help.

Age at interview 38

During the day Danie cared for her daughter and did her own work in the evenings. She found this frustrating and unsustainable.

Age at interview 38

Danie was unable to work as much as usual because she had to take her daughter to hospital appointments.

Age at interview 38