I am a partially-sighted, 41-year-old mum of two. My low vision is a hidden disability. Besides wearing glasses, you wouldn’t even know I don’t have perfect vision. This blog takes you into my world. You can understand my daily challenges and future prognosis for a few minutes whilst reading about my pregnancy journey. I hope it can help you learn more about what a hidden disability is and what impact it can have.
Introduction
Hello, my name is Catherine (Cath) Riley, and I’m registered as severely sight impaired [in the United Kingdom]. I was born with this genetic condition; it is all I know. However, my diagnostic journey has been far from straightforward. Before I explain the biology, I thought explaining what I can see may be helpful.
I have no central vision. The central vision isn’t black; it’s just blurred. I squint a lot. Squinting allows my eyes to focus on what I need to see. I have no vision over one meter. I am colour blind across the spectrum, so I don’t see colours like a typical person. I’ve just learnt what shade is associated with what colour. I have no night vision, and going out in the dark is extremely challenging as I might as well close my eyes. Lastly, I have no depth perception. I know the other side of the road is there, but I don’t know how far away it is. I was never the girl you wanted in your rounders team – just put it like that!
Genetics
Now for the science. My condition is a very rare recessive genetic disorder called KCNV2. Both my mum and dad are carriers of a faulty gene and aren’t affected, yet both my sister and I have it. To contextualize how rare this is, imagine a library of books, and one word in one book has a spelling mistake. Well, both mum and dad have different spellings of that same word. It still blows my mind when I break it down this way. When I was seven, I was diagnosed with another condition, which remained until I was 39. However, when I became pregnant with my first child, I started a genetics journey to ascertain and understand more about my condition, as I wanted to know the possibility of my child also being affected.
A New Diagnosis
My entire family entered the 100,000 Genome Project study. It analyses my genetic profile and makes sense of it concerning my mum, dad, and sister. The results of this test took over four years to report. At this point, I had a second child, and my sister had her first. All three of my children are completely unaffected by our condition and have ‘normal’ sight – although they may be carriers.
The day I received my ‘new’ diagnosis was undoubtedly one of the scariest of my entire life, as I learned that I may go blind. Well, I’m a very practical, glass-half-full, ultra-positive person, but that conversation was like a lightning bolt of realization of something I couldn’t control or understand. I didn’t know if or when it would happen, perhaps even preventing me from seeing my children graduate or walk down the aisle. On that day, my sister and I felt incredibly lonely and vulnerable for the first time, but we had each other. We began to understand what this meant for us and our families. We are strong and determined. Since that day, we haven’t looked back, and we continue our lives not knowing what, when, or even if things will change.
My Pregnancy Journey
As a mum, you encounter so many challenges just getting through your daily routine. Now, factor in a hidden disability that no one can see or understand, and the challenges can be dramatic! So, what have these challenges been so far?
I couldn’t see my pregnancy test, so my husband knew before me that I was pregnant. During my first midwife appointment, I was given lots of information, none of which was accessible. If you are ever in this situation, request accessible documents and accessible prescription drug container labels before and at the appointment.
At my 12-week scan, I couldn’t see the screen, so my husband saw our baby before I did. All I could do was listen to the heartbeat. I was then given copies of the wrong scan. So, the picture I was looking at, whilst getting all excited that I could finally see my baby, wasn’t even my baby and was, in fact, a picture of someone else’s 20-week scan!
Delivery
Both of my children were breech and were born with planned C-sections. Going into a hospital with a hidden disability is extremely tough; everything about your surroundings is unfamiliar and scary and has the potential to invoke anxiety. Initially, I was put onto a ward with five other pregnant mums, as that was hospital policy following surgery. What about the dangers and risks I could have encountered or caused by not being able to see around me – especially at night? I could have fallen or tripped on a chair, bed, or table and, even worse, tripped on a crib. If you are anticipating a hospital stay and are blind or low vision, orient (become familiar with the environment) with the hospital before the stay.
I went into theatre and could only hear voices; I didn’t know who anyone was or what anyone was doing. When my daughter was born, and they lifted her to me, I couldn’t even see her as they didn’t bring her close enough; yet again, my husband experienced it before I did. If you are in a similar situation, advocate for yourself and share the importance of the healthcare providers introducing themselves.
I learnt to change a nappy by feeling for the plastic tabs on the nappy, so I knew which was the back and front. Even picking my baby up out of the crib was difficult because her swaddle blanket was the same colour as the sheet. She was essentially like a floating head; that was all I could see. That’s when I knew I would – and still do to this day – dress my children in bright colours so they are walking, talking highlighters. They stand out loud and proud with colour contrast, and I can see them.
Home from the Hospital
Once I came home from the hospital, I was back in my surroundings and felt much better. However, I’d been discharged from the hospital knowing that a midwife would be coming but not understanding or knowing what they would want or need to know. That information was in a leaflet but never explained to me. What have your babies’ nappies been like? Well, I don’t know. Yes, she’s poo’d a lot, but I can’t tell you what colour it is as I’m colour blind. These were really important questions that I needed to answer so the midwife could track the health of my baby and I. Still, my disability prevented me from doing it independently.
I formula-fed both my children, but have you ever tried filling up a clear bottle with boiling water when you have your finger in it so you know when it’s full? It’s not ideal! A liquid level indicator would have come in handy. I asked my midwife if we could pre-make the bottles each day so my husband could do them each morning before he left for work; that’s what my mum did with me years ago. ‘Oh no no’ I was told, that’s not safe, and you must prepare them as needed. So, I bought a Tommee Tippee Prep Machine, but that still didn’t work as I had to pour water in and scoop the formula. It frequently ended up all over the worktop and not in the bottle! So, I resorted to the readymade formula; I believe Aptamil owes me shares, considering how much I’ve spent over the years.
What I’ve Learned
So, what has this experience taught me? To start with, I’m not afraid to ask for help now. I’ve spent my entire life being fiercely independent, sometimes to my detriment. Now I’ve accepted that it’s ok and nobody will think badly of me for it. I wish I’d sourced information and surrounded myself with other visually impaired mums, even if this was online. I strongly believe that you don’t know what you don’t know, so I could have been better prepared for some challenges if I’d chatted with others who faced similar issues. Additionally, I believe I wouldn’t have felt such loneliness.
Through My Eyes
To finish off, I’ve now set up an online group on Facebook called ‘Through My Eyes’ and on Instagram called ‘Through my Mummy Eyes’, where I share my daily experiences and challenges and how I try to overcome them. Join me to help educate and advocate Through My Mummy Eyes.
For Maternity Health Professionals
Maternity health professionals, what advice can I offer you should you be presented with anyone with a hidden disability? Ask the questions. Try to understand their difficulties. Explain how you can support and help them bridge that gap so they don’t feel my isolation. Introduce yourself. Explain what you will do before you do it so you’re not just a voice in the room. Please take those few extra seconds and speak to them; it will make a difference.
Professionals, gather additional insight into blindness/ low vision and working with individuals with disabilities in APH ConnectCenter’s Professionals section.