Danie
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.
Danie is self-employed, married and has two children: a son aged two and a daughter aged six. Ethnicity: Black Caribbean.
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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].”
During the day Danie cared for her daughter and did her own work in the evenings. She found this frustrating and unsustainable.
During the day Danie cared for her daughter and did her own work in the evenings. She found this frustrating and unsustainable.
It's just yes, worry ‘cause I don't know what's happening and then just fatigue because I’m running back and forth. And I suppose that frustration for me is more that by the time I get in to do some of my work, I need to go off to another thing. My day, I'm a morning person, so my day doesn't start until then. So, I've just kind of had to like - actually Thursdays is the day, which is why this is good that we can talk now, Thursday is the day when I kind of succumb to – I’ve got time to myself, but I also need to use that time to do something that's not work, not cleaning, [inaudible] even if it's just an hour of just like, yes.
Have you had to make financial adjustments, or is that a source of anxiety in terms of the impact?
It's not to an extent, because I'd taken redundancy just before Covid and before I had my I was pregnant with our second child, and so I had plans to not have a huge income for a while whilst I was doing those things, but it got to the stage where it was going to be two years which it was literally to the day my son was born in February and that February was when we got Covid, two years later but that was when I was supposed to be really going for it with the work side. So then it's been from February to now it's been quite deflating because I haven't been able to do as much as I wanted to and then in one of the businesses that I do, I was gonna do it by myself but very conscious that time is limited so I’ve gone in on the business with some business partners which has then meant like the financial side of it, I'm now sharing too so it had an impact but to be honest I'm just glad I've got that flexibility and that I can do this. And we don't live you know we just have, we never waste money, we're not elaborate or anything like that anyway so it’s not been that we've had to adapt much.
But at the same time as all of this you can see inflation going up, just generally the cost of living so that's what we're kind of having to pay almost like a month at a time and just seeing what we're doing.
Danie was unable to work as much as usual because she had to take her daughter to hospital appointments.
Danie was unable to work as much as usual because she had to take her daughter to hospital appointments.
And then also, I suppose the amount of time that we spend on it, because I was having to take her to the hospital once a week. Thankfully, I work freelance, so I was able to do that but that still had a knock-on effect because I either then had to work in the evenings or I just miss out on jobs, which means it has a financial impact. So yeah, it's been adapting to it, but just kind of I think post-2020, everything's just been like, ah we don't know what's gonna happen or we’d kind of go with the flow so at least we were kind of in that frame of mind anyway. If it had happened pre-2020, I think it would have been even more of a shock to adapt to.
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.
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.
They were very assertive, and they said right what we're gonna do is we're gonna implement a buddy who and they're gonna rotate it so [daughter] can have somebody that's gonna be an extra set of eyes with her when she plays at lunch times and break times. There were certain activities so at school they swapped balls for bean bags. That kind of thing. And then they've been obviously really adaptable and just aware that [daughter] will be missing a bit of school because normally Thursday mornings I have to take her to the hospital and then she comes in just before lunch so to let me know what it was she would have missed. At least we could do a bit of that on our journey there and back and yes that’s how it’s been.
Her actual teacher has been off sick for a while recently. But the teaching assistant and the school I've made them aware and spoken to them by email and then spoken to them at pick up time just to make sure that the email wasn't being lost somewhere and yeah, they seem to have done that. They just keep an eye on her. If she gets tired as well, they're looking out for that so that they can say it’s okay for you to rest ‘cause she doesn’t wanna feel like she’s not taking part with the other kids so yeah.
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.
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.
Thankfully, by the time we got to the paediatrics unit, the people at paediatrics unit are absolutely amazing. Have just been very understanding and that kind of thing and I would say easy to communicate with because one of the struggles we’ve found before that was that you couldn't get a hospital appointment. You felt almost guilty taking up time because, you know, the strains that everybody's in and the worst experience we had, without doubt, was being sent to A&E. We kind of knew that as soon as we called 111, we're going to have to be sent to A&E. But having to then put ourselves at risk in a waiting room, full of unmasked people knowing that we could - if we didn't have anything when we did go in, we could be leaving with something worse and having like – yeah, it was horrible, like so horrible that experience.
Was that the time she got the bump on the head? When was that?
No that was at the beginning, that was like back in March. So even though we'd gone through 111 and they'd made like an appointment for her, she still needed to go through the general A&E triage. The setup of the hospital is just not great. So, there are a lot more people than they should have been in there, really. And it got to the stage where I just said, ‘Look we're going to have to wait somewhere else because this guy is literally coughing next to us’ and yeah, we shouldn't need to say any more than that, really. I said why are we here anyway because there is a children's hospital or children's side, could we not go there?
So, there was that and I suppose, the experience is I know that people are learning in terms of Covid and who can be there, who can't be there. It's a difficult one, but I think that was just awful and that put us off actually going to A&E again. So, I totally avoided it, even when we probably should have gone. I’ve just had to be a bit, I suppose clever about how I get her in hospital, and it's basically been like, because I know our doctor's awful. Tried to get an emergency appointment last week and they said, yeah come back in five days. So, I then called the out of hours because I knew that they're more efficient and so via the out of hours, they referred her. It was literally out of hours, got referred to a doctor surgery, the doctors thankfully were just round the corner from the hospital, and we got in straight via the paediatric unit, bypassed A&E, which I think is a good thing. It felt sneaky, but at the same time, then it takes the strain off A&E.