NAVIGATING motherhood is something incredibly difficult for any new parent.
But one woman, Sylvia Chengo, from London, was faced with an additional challenge when shortly after giving birth, she temporarily lost her vision.
The 33-year-old mum-of-two is a content creator and stay-at-home-mum and revealed that she suffers from a sight condition called Uveitis.
Uveitis is a condition that causes inflammation of the middle layer of the eye, which can cause eye pain and changes to vision.
Sylvia is mother to seven-year-old Kai and four-year-old Naarah and revealed that she developed Uveitis at the age of just six years-old, when she temporarily went blind in one eye.
After getting treatment, Sylvia was back to full vision and managed her sight by wearing glasses.
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However, twenty years later, things all changed for Sylvia, when at 26 years-old, she gave birth to her first child, her son Kai.
Three days after a very traumatic labour, things went from bad to worse, and Sylvia temporarily lost her sight.
Doctors were left shocked and confused and didn't have clear answers to explain what had happened – but thought it was potentially linked to her Uveitis.
The mum-of-two told Fabulous: “My vision had completely gone, I couldn’t see a thing. Everything was a complete blur.
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“The pregnancy was fine, nothing to write home about, it was very good actually. I had no morning sickness.
“But when it came to the labour, it was quite an event that took three days. After three days I was rushed for an emergency C-section.
“After that, I was released from the hospital. But by the sixth day, I started noticing that there was a difference with how I could see. Things were very blurry.
“By day seven, my vision had completely gone and I couldn’t see a thing. Everything was a complete blur.
“Despite this, I tried to continue without telling anybody. I just continued as I was. Then my mum noticed. She was helping me with my son and I changed a couple of diapers and she pointed out that I hadn’t wiped properly.
What is Uveitis?
Uveitis is inflammation of the middle layer of the eye, called the uvea or uveal tract. It can cause eye pain and changes to your vision.
Symptoms of uveitis include:
- eye pain – usually a dull ache in or around your eye, which may be worse when focusing
- eye redness
- sensitivity to light (photophobia)
- blurred or cloudy vision
- small shapes moving across your field of vision (floaters)
- loss of the ability to see objects at the side of your field of vision (peripheral vision)
Many cases of uveitis are linked to a problem with the immune system (the body's defence against illness and infection). For unknown reasons, the immune system can become overactive in the eye.
Less often, uveitis can be caused by an infection or an eye injury, and it can also happen after eye surgery.
In some cases like Sylvia, a cause cannot be identified.
“Later on, on that same day, she was showing me how to bathe him and she said ‘ok now you need to wipe his face so pick up the cotton wool from over there’. I then told her, ‘I can’t see his face, I can’t see anything. In fact, everything is blurry.’
“She told me to drop everything and go to the doctors straight away, so I went to A&E.
“I was breastfeeding at the time and I kept thinking that I needed to go home and be with my baby.
“I couldn’t see anyone’s reaction to tell how they were reacting but I could hear them.
“I could hear a lot of uncertainty as to what exactly was going on. I had a feeling that there were a lot of people crowded around.
“They asked ‘What happened? How did it happen?’ but I didn’t know. I just woke up like this.
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“They put me straight through to a consultant and the consultant put me on a lot of medication.
“This resulted in a lot of weight gain, but at this point, anything was worth it to just get better.”
Sylvia explained that after taking the medication, her sight improved and six weeks later, she was able to see again.
She continued: “Slowly my sight did get better and by week six I had gotten to a decent amount of vision and I was completely independent again.
“It wasn’t like how it was before, not by a long shot, but it was better. I could see my son and I spent hours just staring at him.”
Sylvia confirmed that she was on tablets for two years and then eventually they were tapered off until it was the bare minimum. She is still on medication now to manage her condition.
She said: “I’m on a reduced medication dosage to manage it. I’m hoping for more research and some treatment to come up.
"There isn’t a lot of research into treating Uveitis and to reversing the damage that’s been done. I’m keeping my fingers crossed and trying to hold on to what I’ve got now.
“I’m on eye drops, tablets and injections. I take the medication and do the eye drops every day and the injection is every two weeks.”
But although the medication helps, Sylvia still experiences what she describes as ‘flare ups’, which are periods of time where she loses her vision.
She added: “A few years later, I had my daughter, but this time around, because of what happened, they asked me to keep taking my medication, even during my pregnancy. I was a bit nervous about it but they assured me it was safe.
“I was ok until my baby was six weeks old and then I had a flare up. I didn't waste any time and I went to the hospital straight away.
Now I have five per cent vision left, as it reduces with every flare up.
“Again, the same thing happened, they increased my medication. I often say I’m taking the whole pharmacy.
“I think because I responded immediately it was ok. Within about a week or two, I was back to my usual, happy self and my vision was back.
“However, every time I have a flare up, when my vision does come back, it doesn’t come back to how it was previously, so what’s happening is, with every flare up, I lose more sight permanently.
“Now I have five per cent vision left, as it reduces with every flare up.
“When my daughter was nine months, I had another flare up. I had a very normal day, I took the kids to school and I didn’t notice anything out of the ordinary.
“In the evening, the children were in bed and I went to make myself a cup of tea and as I picked up the cup, it just disappeared. I couldn’t see it anymore.
“I thought I was going to faint. I started what I would call looking around, but I was turning around and not seeing anything.
“I could see a lot of spots. It looked like an old static TV screen. Then there was a blur and a haze. I tried to hold out my hand in front of me, but I couldn’t see it at all.
“I called for my partner and told him I couldn’t see. I broke down. I was hyperventilating. I thought, this is it, I’ve had four years of seeing my son but this is it.
“Again, I went to A&E. They took a look at me and told me to go to Moorfields A&E. When I got there, they were worried and kept asking me how it happened.
“They put me on medication and at this time, there was no improvement in my sight for weeks.
“Eventually, after about three months, my sight came back a bit more.
“But since then, I’ve had several flare ups. At least now, I have some hope that when my sight goes, that it can come back. Perhaps not how it was before and not how I would like to see, but I’ve adapted.”
Since losing her sight, Sylvia explained that she is learning skills to enable her to keep her independence.
She explained: “I’m learning braille and I’m learning skills to survive without my sight. I have been learning the route from my house to my children’s school with my eyes closed.
“I can do everything within my home with my eyes closed, but I’m learning how to be outside by myself.”
Unfortunately, there is not much research out there as to why Sylvia’s blindness and flare ups are happening, but the mum-of-two is taking it on herself to find out more.
Sylvia said: “I’ve connected with a lot of people and I’ve been told that this is something that happens to people that are sight-impaired.
“It does happen but it’s not widely known why. There’s no research to confirm that this is happening because of my Uveitis.
“It’s really strange that nobody speaks about it. This should be something that is known.
I am human. As much as I try to be resilient, I can’t just keep smiling when it’s not ok.
“There really should be more support, in terms of mental health. It’s very, very hard to accept and to deal with.
“I had never had a flare up like this before having children. I had one when my son was a newborn, I had another one when my daughter was a newborn, then when she was nine months and since then they’ve been coming in thick and fast.
“In 2021, I had one mid-year and then I had one towards the end of the year which was tough.
“Then I had a massive one in January 2022. I had a lovely week in January when I got better and then when my children went back to school, by the end of the day, I couldn’t see a thing.
“Out of nowhere it happened and this time, it was a lot to deal with. It lasted a few weeks.”
Sylvia now has just five per cent of her vision left, but explained that she has got used to adjusting to life without her sight.
She explained: “I can see within reason up to a metre in front of me, but not in detail at all.
“At one metre, I can’t see facial expressions to know if people are smiling. I can’t see much in detail unless it’s really close to my face. Some things are completely invisible to me – for example insects.
“I’ve gotten used to it now. School mums are very helpful when I’m crossing the road near the school. People will help me when I’m out and about.
“I’ve got two children and I need to look after them both and myself. When we cross the road, I have to tell them to be as quiet as they possibly can, so I can listen to traffic.
“Crossing roads when there’s no lights or zebra crossings is very nerve racking. Sometimes we’ll stand there for a good ten minutes before we cross, because I want to be sure.
“My son does chime in, but I can’t rely on him, I have to rely on my skills and be sure.
“Going to events has definitely been affected. I used to go out and about a lot more. I used to go shopping a lot, but I don’t go clothes shopping independently anymore. But if I do, I feel very overwhelmed because I can’t see.
“In some shops, there are some very lovely people that come over and ask if I need any help and they take me to pick up whatever it is I need. If all shop attendants could be like that, I would go out a lot more often.
“But I don’t want people to do things for me, I try to do things for myself.”
Understandably, losing her sight has been very challenging for Sylvia, but she is doing her best to keep as positive as possible.
Sylvia is using her social media platforms, in particular her TikTok and Instagram accounts, to raise awareness for vision-impaired people and disabled people in general.
Sylvia concluded: “I am human. As much as I try to be resilient, I can’t just keep smiling when it’s not ok.
“You can’t go backwards to who you were before, this is something I’ve had to accept. You have to deal with the negative feelings and accept it.
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“I’m learning to embrace the new me. It’s been very difficult but I have a strong support system around me. I have really good friends and a really good family.
“I’ve got very minimal sight left right now and I want to hold on to it. My aim would have been to have four children but I don’t want to take that risk. My two children are more than enough for me right now.”
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