I realised that I’ve never done a post all about my eye condition, I’ve told you all what it is but have never actually wrote more of an in-depth post for my readers so I thought it was about time that I did so. You may have read in my previous posts that my visual impairment is due to a condition called Retinopathy of Prematurity (ROP), so I’ll tell you about the condition and also about my own personal journey with ROP. I also thought that this post may help some of you out there, so I’m hoping that it may be a helpful resource to some of you in the future.
I was born at 24 weeks and weighed 1lbs 6oz (around 630g) so as you can imagine, I was very small.
I had a twin called Natalie, but she unfortunately died due to having too much oxygen so I’m dedicating this post to her.
If a baby is born at 24 weeks then they are said to be viable and have a chance of survival.
However, there can be many complications if a baby is born prematurely, many of which can be long-term. These include:
- Intellectual and mental disabilities
- Behavioural problems
- Neurological disorders
- Vision problems – children born prematurely are more likely to have vision problems than those who are not.
- Hearing loss – again, children born prematurely are more likely to have hearing loss than those born on time.
For me, being born prematurely affected my vision and luckily, nothing more than that, I know that things could have been so much worse.
Due to the fact that I was born prematurely I developed a condition called Retinopathy of Prematurity (ROP) which is what I want to talk to you about today.
What is Retinopathy of Prematurity?
Retinopathy of Prematurity (ROP) is when abnormal blood vessels grow and spread throughout the retina (the tissue that surrounds the eye) it affects babies who are born prematurely, and can cause vision loss.
The retina is found at the back of the eye and is a very complex and sensitive structure that is responsible for the initial formation of the visual image. The light image is then transferred by the optic nerve to the brain which allows us to see.
If a baby is born too early then their retinal blood vessels do not develop completely which can cause problems. Abnormal blood vessels may grow out of the retina and leak, causing scar tissue to form, leading to detachment of the retina. This damage is known as retinal detachment and if not monitored or not treated at the correct time, can cause vision loss.
ROP mainly affects the retinal blood vessels. When the development of the retinal blood vessels is incomplete, the retina is not receiving enough oxygen so tries to grow new vessels. These new vessels are fragile and cause scarring. The most severe forms of ROP, if left untreated, can lead to retinal detachment and blindness. It is important to note that this is rare.
I have a detached retina in my left eye, meaning that I have no useful vision in that eye. This eye is non-functioning because of this. My right eye however, is functioning but I only have light perception, meaning that I can only see light and dark. So, I am one of the rare cases where ROP has led to blindness and loss of vision.
Causes of ROP
There are many reasons for why babies develop ROP, but it is more likely to occur in babies that:
- Are born very prematurely (less than 32 weeks gestation.
- Have a low birth weight of less than 1500G.
- Have needed oxygen treatment which is very common for premature babies to need more oxygen to survive, but this increases the chance of ROP.
As I have previously said, I was born at 24 weeks, and weighed 1lbs 6oz, I also needed oxygen treatment so these factors put me at a higher risk of developing ROP.
Stages of ROP
There are 5 stages of ROP which indicate what an Ophthalmologist (eye doctor) would see when they look into a babies eyes. They also indicate how much vision a person with ROP has.
The stages are as follows:
Stage one: the peripheral or outer part of the retina has mild changes which is clearly marked by a demarcation line or a flat white line that divides the abnormal area of lack of blood supply with the normal area. Babies do not usually need any medical treatment at this stage, they can usually improve without no treatment.
Stage two: the damage is still in the periphery and considered a mild abnormality but the demarcation line is raised and looks more like a ridge. Babies usually recover without any medical treatment in this stage as well.
Stage three: new blood vessels start to grow on the ridge. These blood vessels are very weak and they will cause vision problems if they start to scar. They can also cause disease’s when blood vessel growth is severe and there is enlargement of blood vessels. Stage 3 ROP usually requires laser treatment.
Stage four: the fragile new blood vessels that grow in stage three can shrink causing scarring which can pull the retina away from the back of the eye, this is known as partial retinal detachment.
Stage five: the retina can become totally detached from the back of the eye, this is known as total retinal detachment. This leads to permanent loss of vision, meaning that it is the most severe stage. Stage 5 is also the end stage.
The most common stages of ROP are stages one and two.
According to the RNIB, in the UK, over 60 percent of babies who have a birth weight of less than 1251g will have ROP. However, the majority of these babies (about 94%) will have mild ROP that does not require treatment. There are only around six percent of premature babies that will have advanced ROP, which means that they will require treatment.
The incidence of ROP is on the rise as more and more babies now survive when they are born prematurely. This means that there are more babies with ROP. However, advances in medical treatment of babies means that fewer babies are needing treatment in contemporary society. Treatments are now offered at an earlier stage than in the early 2000s so the sight threatening severe forms of ROP (stages four and five) are rare.
Personally, I have stage 5 ROP, as I have total retinal detachment in my left eye and have no useful vision in my right eye as like I said, I only have light perception. I also have scarring from operations that I had when I was a baby, to try and stop the retina from detaching in my left eye which were unsuccessful. Over the last couple of years, this scarring has caused inflammation in my left eye which I have to have monitored on a regular basis and I am on various eye drops to stop it getting out of control.
Living with ROP
I know everyone’s experience of sight loss is different, however I thought that I would give you a bit of an insight into my life with ROP. When parents find out that their child has a visual impairment (or another disability) it can be overwhelming as there is so much information to take in, they can feel so many emotions and may not know what to do.
I talk about my experiences on my blog so please refer to some of my other posts for greater in-depth personal experiences. ROP hasn’t stopped me living a normal life, I do everything that I want to do and will never let my visual impairment stop me from doing so. Don’t get me wrong, I have faced many challenges and continue to do so but that’s all part of life and learning from the battles you face. I know that there is no cure for ROP, and although it would be nice to have some useful vision, I know that this may never happen and I’m okay with that.
I started learning braille when I was 4 or 5, learnt to touch type when I was around 7 and can also read various forms of braille including music braille, German braille and French Braille. I also use a long cane, I absolutely hated using this at first but have grown to love it and see it as an extension of me, it’s my key to independence.
I attended mainstream education then went on to graduate university, and I am now in employment. I’m not telling you this to brag, I did work extremely hard to get where I am today but I was determined, dedicated, motivated and had a great support network. It hasn’t been easy and people told me that I couldn’t do it (but I was determined to prove them wrong which I did) but it was worth all the hard work, effort, stress and tears. Having a visual impairment can be difficult but it can be very rewarding so remember that.
Having a visual impairment has given me many opportunities, given me many unique skills and allowed me to meet some amazing people, who I couldn’t live without. If I didn’t have a visual impairment, I know that I wouldn’t have had all of those things! My visual impairment has made me who I am today, I’m proud to have ROP and I’m proud to be a premature birth survivor.
That concludes today’s post, I hope you have enjoyed reading or that it has been of use to some of you. If you have any questions then please leave them in the comments or feel free to contact me.Do you have ROP? Let me know your experiences, I’d love to hear from you.