I had dropped Harry off at school on the morning of Saturday, November 5th, 2022 for a rugby game and when I collected him at the end of the game he had sustained an injury to his right eye. His eye had been caught by the boot studs of an opposing player, cutting his eyelid. I thought a shower and clean up would do the job but it continued to bleed and started to look a bit messy! I thought it best to take him to A&E (Accident & Emergency).
Harry is very sporty and injuries are inevitable!! Harry’s passion is football. He is a fantastic goal keeper and enjoys playing for his local team every Sunday. A few years ago he sustained a double fracture to his tibia and fibula and ended up in a full leg cast narrowly avoiding surgery. This was nothing compared to what I was about to hear in A&E!! The A&E consultant examined Harry’s eye. When Harry was asked to cover his good eye and read the test card letters his response was “ No, I can’t see anything” The consultant was just as shocked as I was asking “but you could see before you came in” Harry’s response was “I thought I could, yes”. The consultant suggested it might be a detached retina but there were no eye specialists at the local hospital so he asked us to go to a hospital a few miles up the road where the on-call eye doctor would be waiting to see us.
When we arrived the doctor was lovely. She did some eye tests and because he couldn’t see out of his right eye she thought it was most likely a detached retina, and advised this would need surgery to repair along with surgery to stitch his eyelid. Not something either of us wanted to hear, but we felt at least it would be fixed.
She asked us to put eye drops in every 2 hours (including all through the night) and to return the following morning and she would see if she could get us in at Liverpool Eye Hospital for surgery. As a dedicated mother wanting to preserve her son’s vision and protect his retina so it could be repaired, I set my alarm and awoke every two hours throughout the night putting in eye drops that made Harry’s eye sting. Not the easiest when your eye is already sticking together with blood and puss.
We returned on Sunday morning. Further examinations showed little improvement. The surgeons at Liverpool Hospital had advised to wait until Harry had been seen by the consultant at the local hospital. This was arranged for Monday morning, and we were to continue with the 2 hourly eye drops until then leading to yet another sleepless night! We arrived at the hospital on Monday morning, the 7th of November. Harry had eye tests and scans and we met the consultant for discussion. The consultant said that Harry didn’t have a detached retina, a brief moment of relief, and the damage to his eye from the football injury was superficial. He thought that the cause of his loss of sight may be due to scar tissue that had built up over his macula, the part of the eye that controls central Vision. It looked as though this had been building up for some time. He said it looked like Coats’ Disease. This is something quite rare and he did not have a lot of reference material for the condition so he proceeded to print a leaflet from Great Ormond Street Hospital. He asked us to wait in the waiting room. As I quickly read through the leaflet I couldn’t believe what I was reading. I felt as though the rug had been pulled from underneath me, that the wind had been knocked out of me, and as I felt a tear in my eye I rushed to the toilet so as not to let Harry see that I was upset. Trying to protect my son from what I’d just read, not believing this could be true, they must be wrong, I would have known something was wrong, I am his mother and I am a nurse. too!!
Harry was seen by an ophthalmologist who did a thorough eye test to see whether any treatment would be beneficial. The consultant also arranged for a fluorescein angiogram (a dye test to see how the blood runs through the ring vessels in the eye and retina).
Following all the tests, the consultant confirmed that this was most likely Coats Disease, and due to the length of time the vessels had been leaking and the scar tissue had been building up, there was very little to do to get the central vision back but he would do everything he could to maintain and preserve the remaining central vision. He booked us in for some laser surgery on Wednesday, the 9th of November.
All the way home I kept asking Harry why hadn’t he noticed he couldn’t see out of one eye! Surely he must have felt something, noticed a change, felt different. Being the typical, cheeky, laid back teenager he was, his response was “Well, I don’t walk around with one hand over my eye!!” and no I haven’t noticed or felt anything. I was wracked with guilt, how could I have not known, why hadn’t I taken him for an eye test sooner? The reason being of course that he hadn’t complained about not being able to see properly, school had not noticed anything and for years he has been a brilliant goalkeeper with no hand-eye coordination issues to note.I spent the next 24hrs researching Coats Disease. I couldn’t process it all properly and even though I had seen the scan pictures myself I didn’t want to believe what I was reading. No cure, no chance of getting his eyesight back, a chance that things could get worse and the possibility he may at some point lose his eye.
Harry was very resilient and understanding, certainly taking it all better than me, like he said……. “It’s genetic, I’ve had it from birth, it was gonna catch up with me at some point.” How could he be so understanding? I was angry, upset, wracked with guilt. My son had just turned 16, had everything going for him and suddenly the stark, honest truth hits home that he has no sight in one eye!!
We continued to attend regular appointments for laser surgery and injections. Each time the same processes were carried out, eye test, eye scan and meeting with the consultant. All the staff and consultants were lovely, slowly recognising Harry in the clinic as a regular, but each time, I have to say, it retraumatised me. In between clinic appointments everything ‘looked’ and seemed normal. Life went on, Harry continued with his football, winning the cup and getting “man of the match” for his goalkeeping prowess. You almost forgot that he was now partially sighted. When we attended the next appointment the reminder was oh too real.
On Friday 6th January 2023 I received numerous phone calls from the school whilst I was at work. I knew something mustn’t be right as this didn’t happen very often. Harry had been sitting in class and had had a bleed in his eye. Quite scary for him as he could see the redness of the blood trickling through his eye, but even more worrying as this was something the consultant had told us he wanted to avoid.
I telephoned the eye clinic who spoke directly with the consultant and they advised us to go straight over. Harry had a lot of blood in his eye, the consultant was amazing and very proactive. He got his junior doctor to make contact with the surgeons at Liverpool Eye Hospital and made both a verbal and written urgent referral. The consultant wanted them to perform internal laser surgery to stop the bleed and to clean up the eye to protect the retina. They didn’t want the blood pooling and pushing the retina into further detachment.
We traveled over to Liverpool the following Tuesday, 10th January 2023 for a walk-in appointment. We waited an absolute age but knew it had to be done. Unfortunately the experience with the consultant here wasn’t as positive. She appeared quite dismissive, basically saying that there was nothing she could do for his sight and couldn’t understand why Harry had been referred. Despite my efforts to try and explain what our consultant wanted to achieve (unfortunately my nursing skills are within the Learning Disabilities field not general or eye specialist nursing) we were discharged. The bleed took a few days to stop and then it took a while for the blood to be reabsorbed but fortunately there was no damage to the retina.
Harry and I have continued to visit the hospital for laser surgery and injections. While it was quite intensive to start with, it gradually slowed to one visit per month. Our Consultant, Mr. V. Kotamarthi, has been fantastic at Leighton Hospital. It has been clearly demonstrated that he has Harry’s best interests at heart. Such personal care and treatment, avoiding appointments around Harry’s exam preparation, delivering eye injections himself as Harry had a previous bad experience with another doctor, apologizing for our having to be seen in the AMD clinic (Ageing Macular Disease) when Harry most definitely doesn’t fit into that category and whilst he says he cannot do much to return sight to Harry’s central vision he will do his best to maintain and preserve his peripheral vision so that he can continue to lead a normal and varied life.
Harry had a break in treatment whilst he sat for his GCSE exams but recently returned for a checkup and further fluorescein angiogram. We have an appointment on 29th August 2023 to discuss the findings.
Harry has been so brave, resilient, understanding and strong throughout this and I am so proud of him. His courage and determination to not let this set him back, knock him down or even slow him down has been amazing. His sister and brothers have been supportive and understanding, but enjoy exchanging banter with him about his affliction, showing that Coats Disease will not beat him. He can laugh and joke about the fact he only has one good eye, monocular vision, with family, siblings, football mates. He is still Harry. I, on the other hand, still want to scream, shout, and remain in denial that this is happening to us….. But in reality it is….. so now I want to shout and scream about raising awareness, tell people to check their children’s eyes, to know the glow and to please get in to be seen early before sight is unnecessarily lost.
‘Know the glow…..’ first pic with a flash to test out what I had just read about…
Eye injection, so brave although not his most favorable experience.
You can still achieve your goals and dreams.
