360 degree trabeculotomy success: 4 years later

 We had our checkup at Moorfields Richard Desmond Chikdrens Eye Centre in early November. It was the first time our family had travelled to London since March due to the COVID-19 world we have been living in, and I have to say Moorfields did a fantastic job. We felt very safe and they had plenty of protocols in place for social distancing, masks at the door, etc Thank you, Moorfields!

We had visits with the orthoptist, optometrist, and two consultants including Mr. Brookes. Net net, the pressure is still under control, which is such fantastic news. We still watch for signs even now, four years after the 360 degree trabeculotomy, but Aaron’s eyes have remained clear and healthy. We feel very lucky!

His eye sight is still developing. His left eye is nearly 20/20 whilst his right eye is weaker. This was an issue before we even knew we had congenital glaucoma - the wandering right eye was why we took him to the doctor when Aaron was five months old in the first place. So we have been patching for the past year. We have seen some progress, which is encouraging! We were using fabric patches for the first few months but Aaron quickly worked out how to position his glasses so that the patch was useless. So we are exclusively doing ‘sticky’ patches now. We go back in Feb 2021 so fingers crossed for improved vision in the right eye. 

All in all we are pleased with Aaron’s sight, and especially with the continued success of the 360 degree trabeculotomy surgery for the congenital glaucoma.

Congenital glaucoma success with 360 trabeculotomy: 2.5 years later

It’s been ages since I’ve posted, but wanted to share that Aaron just has his bi-annual checkup with Mr. Brooke’s at Moorfields eye hospital and his congenital glaucoma is still very much under control.   Aaron’s eye pressure is 12. Amazing. His sight seems to be developing normally as far as we can tell. The glasses have finally been accepted as part of his daily routine (that’s a separate post in and of itself).

So for anyone considering the 360 trabeculotomy to treat their little one’s congenital glaucoma, this by far seems to be the most superior option.

Getting a toddler to wear glasses - part 1

So following on from my last post, we decided to give the glasses a go today as Aaron is in a decent mood! I surprised him as he was playing with his cars/garage, so he was fairly distracted and he didn't fight me, despite my fumbling around with the straps.

We made it through several runs of driving the cars up and down the ramps, and a few pages of "What the Ladybird Saw Next" before Aaron decided to start messing with his new specs. It was about five minutes in total, which, after reading about some other parents' experiences, ain't bad ;-)

360 trabeculotomy - 14 months later

Posting this two weeks late but Aaron had his follow up visit at Moorfields Eye Hospital, Thursday, 7 December and spoiler alert but I am happy to say that 14 months on, his intraocular pressures are still very well controlled!

It was a bit of a production getting up to London as the appointment was in the middle of lunchtime/nap time, plus I was dragging a dress for a black-tie gala later that evening (which ended up hanging rather neatly off of the back of the buggy)! I should also mention that we had 20-mph winds and rain that was coming down in sheets. We were very lucky that our train ran as scheduled (the three prior had been cancelled).

Once we were at the hospital, we went through our usual visit to the orthoptist. I secretly hate this part. Aaron gets shown a bunch of beige cards with very faint drawings of animals on them, which he never seems interested in and I am never sure how he is supposed to react. I basically sit there trying to contain my impatience (I hate not knowing what's going on) until the orthoptist says everything's fine. This latest visit was no exception, except the usual 'Aaron's eyes are developing fine' was then followed by 'Has Aaron ever had a glasses test? No? Hmm, ok.' Gah.

Next we went in to see Mr. Brookes, who was delighted at the clarity of Aaron's corneas and confirmed that the intraocular pressures are stable at 13 and 14. Great news! The 360 trabeculotomy continues to deliver successful results!

Mr. Brookes then mentioned he would like to dilate Aaron's eyes so that he could get a better look at the nerves...and so that we could go see the optician for a glasses test. Aaron sat remarkably still during the eye drops (good thing too, because I was not looking forward to pinning down a kicking, squawking toddler) and we had about an hour wait to see the optician. And guess what, kiddo needs glasses.

It wasn't a surprise (I knew we'd be leaving with specs when the orthoptist said 'Hmm'), I have always known Aaron would need glasses at some point and I KNOW we are lucky he can see at all. (I have to force myself to remember it sometimes, because Aaron seems so normal and you'd never know he has congenital glaucoma unless you hold him on his back under a bright light, but I do know how truly, incredibly lucky we are.)

However, because the congenital glaucoma is now so well managed, I am back to lamenting day-to-day about 'normal' mom problems: balancing family/career, trying to survive teething, tantrums, etc. Some mornings we barely get out the door, so adding glasses into the routine just sounds like a bloody nightmare. I feel lame-o admitting that, but it's the truth.

Moving forward and trying to be optimistic about things, we at least have a lengthy Christmas break now, where all three of us are home and Adam and I can try to introduce Aaron's new accessory slowly! I am reading up on the best ways to go about this, am guessing there will be tears and a struggle for Alpha dog. But if we can survive a 360 trabeculotomy with a 5-month old, we will survive glasses, surely. Watch this space ;-)

360 degree trabeculotomy success - one year later

Today's been a Saturday like any other. I made pancakes for my husband and 17-month old son, I went for a run, we took a family outing to the music store, and at the end of the day there are books, toys and odd bits of breadsticks strewn from one end of our house to the other. It's 19:45 and I'm knackered.

But a year ago today I was wishing for these types of days, where our worries would be centred around how to entertain a toddler vs. whether he'd lose his vision in just the one eye or would it be both.

Today is the one-year anniversary of Aaron's 360 degree trabeculotomy, which for all intents and purposes, has been a success and allows us to have our crazy but ordinary life. Aaron's eyes have gone from cloudy, flat, almost colourless orbs to wild, dancing blueberries, curious, mischievous, missing nothing. Clear.

Glaucoma free eyes 

A year on it is easy to forget that congenital glaucoma is even a thing. We are on bi-annual checkups with Mr. Brookes at Moorfields (as compared to monthly at first) and Aaron seems to have no idea, not of the fact that he was one of the first to have this revolutionary surgery nor of the fact that he's quite famous now, having been featured in everything from case studies to press articles.

Ok it's possible he might think he's a little bit famous

I started this blog as a way to share our journey and what we learned along the way with family, friends and strangers. I've kept it focused to the very niche topic of congenital glaucoma.

I'm never going to have hundreds of thousands of followers and that's ok. It's just that I remember telling Mr. Brookes once that there were NO positive blogs out there about congenital glaucoma and he replied that it's likely because once it's treated, there's not much to say - you go on with life. And that's true, we have gone on and I post once in a blue moon.

But I also remember the desperate feeling I had when I saw NO positive blogs, or saw the blogs that sounded like things had gone mildly ok for the kid with congenital glaucoma and then the posts just...stopped. And I was left wondering 'WHAT HAPPENED NEXT?' (I've never been a 'glass half full' person and having a baby who was 1 in 10,000 hasn't exactly improved that, although I'm working on it. The fact that we have a congenital glaucoma baby whose vision is now 'good enough that he could drive' is definitely something to hang onto).

I digress.

I will keep posting, even if one person per month reads it (even if that's sometimes my aunt), because I've had a few people get in touch with me to find out more, I've seen traffic come in from Russia, China, Sweden, the United States. Other 1 in 10,000's. Other scared parents. I hope this blog continues to help them. And maybe someday it will help Aaron, if he ever wants to know the ins and outs of what happened, how lucky he was and is, and why even ordinary Saturdays are ones to be grateful for.

360 degree trabeculotomy - continued success 9 months on

Another good visit to Richard Desmond Children's Eye Centre at Moorfields this past week. Aaron's last appointment was in the end of April, so this was the longest we've gone with no eye exams since he was first diagnosed with congenital glaucoma last October. Since the last visit, Aaron's vision has been continually improving and we've noticed things like:

• His squint is improving. When he's really tired one eye still goes a bit lazy but in general Aaron can focus more with both eyes and they are less 'rolly' for lack of a technical description 
• Less sensitivity to light. We can push Aaron in his buggy with no cover on him, he goes on the swings and refuses to wear a hat or glasses (lots of sun cream) but always seems fine. Less squinty, less uncomfortable. And we can change him with overhead lights on.

All good things and really positive to see that the 360 degree trabeculotomy results continue to hold. At 14.5 months, Aaron's the oldest person to have had the surgery so we don't have a lot to benchmark against but Mr. Brookes said Aaron's vision is good enough that he could drive a car (if only he could reach the pedals).

With the exception of the checkups at Moorfields, congenital glaucoma isn't something we think tons about these days. That said, we try not to take for granted how lucky we are. All the cogs were really in place for little Aaron  - where we were initially referred for the squint, where we were referred upon the congenital glaucoma diagnosis, encountering someone like Mr. Brookes who was willing and able to perform the 360 degree trabeculotomy, and just the sheer fact that Aaron's Schlemm's canals were fully formed in both eyes. We are truly blessed that we are now having conversations about normal toddler things vs continuous hospital appointments, and likely more surgeries and EUAs, which is generally the case when one is diagnosed with congenital glaucoma.

So that's it for now. We go back to Moorfields in December to see Mr. Brookes and hopefully we will be reporting Mack more of the same!

Congenital glaucoma in the press

Aaron's story about his progress with congenital glaucoma and continued success following the 360 degree trabeculotomy was featured in the Daily Express yesterday:

http://www.express.co.uk/life-style/life/818788/Anniversary-Richard-Desmond-Children-Eye-Centre-Moorfields-Hospital

The Richard Desmond Eye Centre at Moorfields Hospital is the only facility in the UK to perform the 360 trabeculotomy, we feel very thankful for the good work they do there and that we were able to have Mr. John Brookes perform this procedure on Aaron!