INTERVIEW WITH ELENA KALISPERAS: THE MOTHER OF A CHILD DISABLED BY JAUNDICE

Katie Abson interviews Elena Kalisperas, where she discusses her son’s diagnosis with Jaundice, her family’s passion for spreading awareness, and her own personal journey with mental health. 

In your own words, how did you find out about Vasili’s condition, and what happened in the days following his birth?

I had no idea beforehand what Jaundice was, I just knew that it was very common in babies and on the exterior your baby looks yellow.

I had a very healthy pregnancy. I had an incredible water birth and as soon as I came out of the water the nurse looked at me and said “you’re ready to go home” [laughs], and I was a bit in shock because my body was still shaking from being in the water. I asked if I could stay the night at least before going home because I knew as soon as I went home, I had a five-year-old waiting for me, all my family would want to come and see my baby. But it made sense for me to go home because everything was settled and fine, so the paediatrician signed us off. But by the next morning, he was not feeling very well. I was persistent in breastfeeding, but he wasn’t latching on brilliantly. He was looking really yellow; it wasn’t just a bit of yellow tinging in the eyes, his face and body started to look yellow.

A community midwife came to see me midday and I expressed to her my concerns and she reassured me that everything was okay, and the advice she gave me at the time was to put him by the window. But unfortunately, it wasn’t. By the next Sunday morning, I had no follow up from the community nurse, or her mentor, and it got worse. My son became really lethargic to the point where he couldn’t wake up for a feed. I thought, something just isn’t right. I tried to wake him up by changing his nappy, and his wee came out bright orange. That’s when I was really concerned.

We rushed to hospital and the paediatrician looked at him and said he’d have to have a double exchange transfusion and phototherapy. But at the time I had no idea what any of this meant. It just made no sense; I was completely naïve. They rushed him into the neonatal unit, they put a cannula in his hand, and he just collapsed. We thought; oh my god, we’ve lost him. I had a complete out of body experience; I felt like I was watching myself in a movie, I just couldn’t believe what was happening.

We had to wait for hours, and the nurse pushed us to a waiting area. We could hear babies crying; premature babies twins. We were waiting to hear him cry. We didn’t understand what was going on; we thought we had a healthy baby. We had to wait for bloods to come from Birmingham hospital, then we were able to go back and see him. He was in phototherapy, his eyes were blindfolded, and I’d never seen so many wires coming out of a little body. I broke down in tears, it was just unbelievable. We were in there for three weeks. We had to wait to see if he was going to pull through to be able to breathe independently.

We knew he was severely brain damaged but to what extent we didn’t know. We had to have lots of tests done, an MRI and audiology appointments. It unravelled that he had severe brain damage from the Jaundice that had spread into his brain and damaged all the nerve endings, so all the connections from the brain to the body were not connected. So, although his vision was fine, they called it CVI – cortical visual impairment. So, he can see but he can’t recognise what he can see. He’s profoundly deaf and has cerebral palsy in all of his body.

When he was one years old, he had a cochlear implant, and when he was two, he had the second one so he has bilateral cochlear implants, which were both successful. He has sound which has opened up his world completely, and we’re very grateful for that.

The difficulty is that in hindsight we then figured out a lot of things that went wrong and that were out of our control. I didn’t know at the time that the community nurse that came to see me was a third-year student, and she wasn’t fully confident to see me alone. She didn’t follow up with her mentor, and her mentor didn’t follow up with me [laughs] so there were lots of things that should’ve been done that weren’t.

And I think if I’d had a fully competent nurse come to see me, she should have taken action straight away. Those three things; being Jaundice, lack of feeding, and then she put ‘no concerns’ in my notes, were red flags, especially because – before three days of birth the baby’s liver isn’t developed enough to get rid of the Jaundice from the body, so that’s why, if he’d had phototherapy at that point, he would have lived a normal life, but because it got left it built up; so, it starts from the shoulders, goes to the toes then it comes back up, and then once it comes back up again it breaks the blood-brain barrier and that’s when it causes brain damage. It got left untreated too long.

The system really let us down, the midwifery team and everything. They apologised, but we could do nothing to change what had happened.

It’s fascinating, listening to your story and I just can’t imagine what that must have been like. So, to my understanding, do you think his brain damage could have been avoided if guidelines had been followed and the midwife had been trained more?

Yeah, completely preventable. The guidelines are in place to prevent this from happening. This used to occur years ago before phototherapy existed, but in this day and age, it shouldn’t be happening but unfortunately, it’s happening way too often but I think there’s other factors that play into that like people being discharged too early, unqualified nurses.

There’re other things as well; you can have breastfeeding Jaundice, which I never knew of. Things can exaggerate and escalate the Jaundice very quickly, so things like blood incompatibilities or blood deficiencies which my son did have which I wasn’t aware of at the time. A lot of people live with unknown conditions that don’t come to light until something like this happens.

I was in the neonatal unit and I saw other babies go into phototherapy and go home and I was in tears saying, “that should have been us”. I was happy because he made it through, but it was then going home and knowing things were different I was like “what now?”.

There wasn’t really much support from them either. I was bombarded with hospital appointments and professionals coming in. I was so overwhelmed I didn’t have time to breathe. But in some ways, it kind of helped me keep going because I knew I had to wake up and go to hospital appointments, I knew people would come into my house. In some ways, I look back and knew it helped me keep going.

You mentioned that you didn’t really have any kind of emotional support. How difficult was it to come to terms with everything that happened without that kind of support throughout the process?

It was a living nightmare. We would cry every night. I just couldn’t get my head around it. It was really difficult to accept that this had happened and was completely out of my control. To know that there’s nothing you can do. If your baby has a hole in the heart there are so many things that can help, but when it’s the brain, there’s just nothing, there’s no cure. We were searching day and night. We were desperate for anything.

It wasn’t until a year later that we started to find support groups on Facebook. We found a family that went through the same thing that had happened to my child. My husband was very active and used social media as his kind of therapy, but for me I didn’t want to talk about it and I became quite isolated. Certain things would trigger me; because I had a water birth, every time I had a bath, I would go through everything in my head, and I would feel like I was given birth again because I was so desperate to go back to that moment where I had control, and knowing what I know now I knew what we would have done differently. So, I was torturing myself really, I couldn’t move on from the past because I wanted to try and fix it.

There were no counsellors at the time that could help us. I think it was two years later we then had to pay privately for EMDR treatment, which really helped me. I had to go through lots of sessions where I’d have to relive the whole experience, which was really difficult. But I’m glad I did it because it definitely helped me come to terms with it and accept it.

You mentioned that your son can now hear sound. When you found that out amidst the darkness of the situation, how much of a relief was that for you?

We had the first few tests and we found out he was profoundly deaf. Then we had to wait nine months for them to test it again, because sometimes some of the connections and neurons in the brain can reconnect. So, I really had hope that there was going to be something. But when we went to the hospital, we found there was no sound coming through whatsoever, so he was profoundly deaf.

The cochlear implant team at Birmingham university said he was the perfect candidate for a cochlear implant, and they suggested the earlier the better. So, we went ahead. It was a scary procedure and quite a major one, it was a five-hour surgery. It opened up his world completely because before sound he was very jumpy, and he’d be frightened when people approached him unexpectedly. Before sound he was very vocal because he couldn’t hear his own voice. After [the surgery] he was quite quiet because he was so observant and listening and taking in all these new sounds that he’d never heard before. So, it was a strange transition. But now he’s got both cochlear implants, he’s so familiar with sounds and songs and can hear people come in. He recognises our voices and his name, so it’s just been amazing.

When you have the operation, you have to wait a certain number of months before you can actually switch it on, so you can see if it works. When we went to the Aspen University and we switched it on and for the first time he was laughing, his face lit up, it was the best thing ever. I felt like I could give him something back at least from what he’d lost. 

Did you feel like your connection to him was opened up because you had more communication with him? Was it emotionally overwhelming for you?

Yeah, it was. But before he had sound, I used to hold him really close to me and he would pick up on my vibrations and my voice. He’d put his hand on my throat and we’d really connect even without sound, I felt if not closer in some way.

But yeah, obviously it was amazing that he could now hear our voices, and the first thing I said was “I love you”.

It was very emotional.

Do you have any advice for new mothers that are going through the same experience to cope with the loss of communication with their child?

He has speech and language therapy, and that was one of the things they recommended to pick up on vibrations of the voice. A lot of it was to do with him eating and drinking. I’d get really upset and I’d say, “he can’t hear me”, but the therapist would reply, “he can pick up on your vibrations,” and would reassure me that here’s still that connection there. Even having head-to-head, so when you’re talking, they can feel everything. I would sing songs and he would be in hysterics. He really picked up on rhythm.

So how is Vasili doing now at nearly nine years old?

He’s amazing. He’s just a happy little soul. Every morning he wakes up smiling and laughing, he’s just happy to be alive. And that’s a beautiful thing to see. It makes me happy, because if he was constantly crying in pain that would really be upsetting. We did go through some years where he was constantly quite vulnerable. He picked up lots of infections and colds and would be in hospital for weeks. He had a really horrible, nasty infection after one of the cochlear implants, and that was really scary. He had to have IV antibiotics, and some of them he couldn’t have because he was allergic.

So, we’ve had lots of scares. But I feel like he’s come to the point where he’s stable now. Having carers that come in and out every day I think has helped his immune system by being in contact with so many different people all the time. It’s mostly the cerebral palsy which is the most difficult to manage. Giving him consistency is hard as well, when you’ve got other people supporting him as well. If we’re not being consistent then he can’t progress and learn because he relies on routine. When he knows what’s coming it doesn’t give him anxiety.

But he’s got a very chilled, placid kind of personality. He’ll only cry or shout when he’s trying to tell you he’s in pain. He won’t just moan or cry for the sake of it. He loves his music and dancing. He does all kinds of therapy; we do hydrotherapy, he has a standing frame so he can stand. So, it’s just all about maintenance now and making him enjoy each day as much as possible.

Was Vasili’s routine interrupted at all during lockdown, and how has the virus impacted you guys? 

Obviously, it has been different. He enjoys school and the interactions that he used to get with his peers. But to be honest with you, his routine has pretty much stayed the same, other than the transportation. So, if anything, he probably does a lot more at home than he does at school because it takes away a lot of wasted time; from waiting around for other kids, or the schedule of school, or getting from the classroom to a different room for therapies. So, actually we were able to focus a lot more on what he needs.

I think if I didn’t have support and I had to do all on my own, because I have another two children, I don’t know how I would have handled it at all. But because I’ve got the support in place, I’m able to make sure that everything stays regimented for him.

We’re very fortunate in that way. We make sure that he gets out and about every day so even if it’s not in the garden, he’ll go out for a walk somewhere or to the park. 

You have an online presence of just over 5,000 followers on Instagram where you assert how passionate you are as an advocate for TBI (Traumatic Brain Injury) and Mental Health. You have also created GoFundMe pages to help fund money for so many amazing causes, such as domestic violence, mental health, breast cancer, Jaundice awareness, and more. How important is it for you to spread awareness and start conversations over these critical subject matters? 

It’s become a real passion for me. It’s not just about what happened to me and my family, I’ve seen it happen to so many other families before me and after me. And because we wrote a book about our story called Our Little Spartan, I’ve had people reach out to us to hear our experiences and we’ve helped so many people.

But not only that; my dad suffered with severe depression and psychosis for many years, almost 15 years ago. Those days, I had no idea about mental health or how to deal with it, none of my family did. I don’t think there is enough support for the family as an overall when someone’s diagnosed with a mental illness. He went on medication and he was in and out of care homes. I don’t think it was managed very well, so I’m very aware that there’s a big need for these conversations, because, obviously, these last few years have been very difficult for so many with the pandemic. I think it’s important to be very open and honest about what we go through instead of pretending that we’re fine. It’s important to have someone listen and validate your feelings instead of saying, “You’ll be fine. It could be worse. You’ll get over it.” I call it toxic positivity.

For me, doing these Instagram lives and having people share their stories, it allows people to listen to other people and their difficulties. I hope that it’ll inspire them to feel okay to share what they feel.

My mission is to share my story as much as possible to spread awareness of Jaundice. We have a petition going to put it on the Never Events list. It’s on the Never Events list in the USA, so we’ve been trying to fight for it to be put on the Never Events in the UK as well.

It’s my duty to advocate for those who have been through the same thing and similar situations. I never thought I would go through difficulties with my mental health, I’ve always been a very positive person, but I don’t think you recognise it when you’re actually in it. My husband was able to give me that nudge to get the support I needed. He’d call the doctors up for me, and things that I probably wouldn’t do myself because it just felt such an effort at the time.

It’s difficult with mental health. It’s hard to get yourself out of it, so if you’ve got someone there that recognises when you need support, that does really help.

You can see the response that you have from your pages and see how much people appreciate it. It’s still such a taboo subject, and to have that kind of space where you can connect with people through social media is just so wonderful.

Thank you. I didn’t really start sharing my personal journey until last summer when we were in the first lockdown, as it gave me time to reflect. Over the last couple of years, I’ve felt my best, my mental health and physical health are really well. I’m ready now to share what I’ve been through.

When I started doing lives on my story, people started reaching out to me and that’s when I felt there was a need. I connected with so many people. I didn’t have a plan. I didn’t sit and think, actually, it’d be great to do Instagram lives every Tuesday, it just kind of happened. I’ve been hosting the Clubhouse to break the stigma of mental health. That’s been very successful.

I’ve done Mental Health First Aid training and that’s been really eye opening. I’d recommend that to anyone. I think everyone should have Mental Health First Aid in the workplace. I think First Aid and mental health come hand in hand; if your mental health isn’t well, you can’t be physically well. The mind is much stronger than the body and I think it’s about prevention, rather than trying to solve it when it’s too late.

I couldn’t agree with you more. You post a lot of inspirational quotes on your Instagram. Do you find that you often refer back to these in times of hardship?

Yeah, I mean most of them come from me, there are some I’ve found from certain books, but most are just things that I feel.

I’ve been talking about this lately; it’s called a WRAP. It’s a Wellness Recovery Action Plan, it’s a toolbox of stuff that you can do when you know you’re starting to feel a bit down. For me, my fitness is what really helped for my mental health and routine.

During the first two lockdown I’ve been fine with keeping on top of my routine, but this last lockdown hit me harder, I think because it was so sudden. But Clubhouse came into play and that helped me reconnect with so many other amazing people. So, to me what keeps me going when I’m feeling down is knowing that I’ve been through much worse, and I know it’s completely normal and natural to have down days sometimes, it could be hormonalreasons or you’re just not feeling as motivated, but usually I have such a regimented routine that even on those days I’ll still get up and do my usual thing.

When I’m feeling really low, I will think of the things I’ve posted or people that I’ve helped, or just getting out for a walk if I can’t bring myself to exercise.

I think self-love and care is really important for me now. I’ve been on a complete journey of self-recovery. I’ve had therapy, which has really helped me.

And then I was able to kind of overcome my trauma. I think it takes time and when people are going through grief or anything I always say be patient with yourself and give yourself time because grieving is a process, and I didn’t lose my child, but I lost the child I thought I was going to have. It was a form of grief for me. During different stages of his life, I would grieve again because I would compare him to what my daughter was doing and that would upset me.

But now, because I’m totally accepting of what’s happened, I’ve built that self-love. Now I see things in a completely different perspective. Seeing his wheelchair right at the beginning; I’d break down in tears. But now I think; that’s amazing because that’ll make his life easier. It’s not about the exterior, it’s all about what’s happening internally.

What do you think strikes you as the biggest difference in your mindset, over the past almost eight years?

It’s a 100% turn around, it’s completely different.

Before giving birth, I think I was a completely different person. I knew nothing about life. I was quite young, I was in my early 20s, and I think I was maybe naive and gullible. I think we all will go through some kind of traumas in our life, some go through it in their early years and some people won’t reach it until later. But I just think it’s all a lesson, there’s always something we can learn from. I’m much more grateful for everything now. I think we expect things are going to go our way and we think we’ve got control, but we don’t. When it unexpectedly goes completely different to how you plan, I think that’s when it’s really hard to accept and comprehend.

Some people would say ‘it happens for a reason’ and I’d get annoyed with that, it wasn’t what I wanted to hear at the time that I was in pain. But, on reflection it’s taught me so much and also taught so many others. It makes you more grateful, I suppose. Some things that we go through aren’t always for us, it’s for other people as well, other lessons that perhaps people need.

I’m quite a believer of faith as well. I think maybe God felt like I could cope with it. So then, our family could teach other people things that they needed to see to be grateful.

What impact do you hope to create by spreading awareness of Vasili’s story?

I’m committed to trying to prevent it happening to other families. If I didn’t have the support around me, I might have been in a much worse situation if I didn’t keep fighting to get the help that I needed, or that my husband needed or that my child needed. Because nothing came easy, everything was such a huge battle, even the things that he was offered through the NHS or through the government funded or even going private, they take such effort and time filling out paperwork.

So, my mission is to prevent this from happening. I’m trying to educate people on Jaundice because it’s not spoken about. Once you have a baby, we get these huge bounty packs given to us and there’s not one thing about Jaundice.

We were able to make some changes to some of the local communities here, so they monitor Jaundice much more now. We created a video of our son and they use in the university now when they’re teaching midwives, so that’s been really good. Just positive changes like that, that’s our mission. If I can get it on the Never Events List that would be the best because that hopefully it will put a stop to this happening.

I think we’ve just got to keep going. And the more we share it, the more people will be aware of it.

Follow Elena on Instagram at @elena___k, and read My Little Spartan: Unleash your Inner Spartan through Amazon: amazon.co.uk/My- Little-Spartan-Unleash-Innerebook/ dp/B07FM111CJ.

You can also keep up with Elena and Vasili on their website: mylittlespartan.co.uk

If you enjoyed this interview, you can follow more of Katie’s work on Twitter via @katieawriter. 

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