My 4-week-old baby girl was issued terrifying diagnosis – I thought I'd imagined symptom

OPINION

My daughter Maggie was diagnosed with retinoblastoma, a rare eye cancer, when she was four months old. I’d had a nagging feeling that something wasn’t right since she was born, but was told the initial symptoms I described were “normal” and “don’t compare, all babies develop at different rates”. These were a gunky eye, swollen eye surroundings, and not focusing as I expected. She was also very unsettled, which we now know was probably headaches from photosensitivity and the tumours growing in her eye.

I started noticing a strange glow in Maggie’s eye, which at first I thought I must have imagined. As the nights started drawing in, artificial light made retinoblastoma tumours more easily visible, so when it became more obvious, a short Google search told me it could be very serious, and I unsuccessfully sought help. Long story short, we were dismissed so often that I approached my local MP in desperation, who intervened and got us the appointment we needed at our local hospital’s ophthalmology department.

Things moved very quickly from then onwards, where the hospital performed tests, including an ultrasound, during which I could see a cloud-like structure filling her left eye.

They referred us to the Birmingham Women and Children’s Hospital retinoblastoma team with an appointment in the same week.

Maggie was diagnosed with bilateral retinoblastoma, which meant tumours in both eyes - Grade B in the right and Grade E in the left. We had been told the day before that she had already permanently lost her vision in the left eye, but we weren’t expecting the disease to be in both eyes. We were devastated.

Mentally, in the first few months, I was on autopilot. I was still dealing with the grief and aftermath of the loss of my brother, who died in a tragic motorbike accident when Maggie was two weeks old.

I put one foot in front of the other and did what I needed to do for my children. The support I accessed at this time was mainly through Childhood Eye Cancer Trust (CHECT) and Young Lives vs Cancer, the latter of which was only when we were actively in Sheffield Children’s Hospital for chemotherapy.

The specialist nurses at Birmingham and Sheffield are wonderful, but their role isn’t to support me - it is, or was, to fulfil their nursing role during chemo appointments and examinations under anaesthetic.

Three months after Maggie’s initial diagnosis we made the decision to remove her left eye, as it was so damaged by the treatment and size of the tumour. We truly believed that this terrible decision would be the best and least invasive treatment option, allowing her to lead a better life.

Unfortunately, there have been countless issues with the socket in the following months and years.

The implant came out, and the fat that was injected to replace it continuously grew cysts. During an MRI to check the socket, what looked like a mass or a cyst was found on the pineal gland on her brain.

There is a variation of retinoblastoma called trilateral retinoblastoma where tumours can grow on the pineal gland. This variation is often fatal, so we spent days thinking the worst until we received almost certain reassurance that the mass was a cyst.

Maggie’s cancer diagnosis and the aftermath of the disease will affect her for a lifetime, and it has affected me and her family too.

Maggie’s type of cancer means that she is more susceptible to other cancers, and she can also be affected by retinoblastoma tumours until she is around six years old. Knowing this, and because of the intense trauma, I found it hard to get back to “normal” life.

I found it hard to accept that our whole life looked different and that I was in a unique club I didn’t want to be in. I feared death not just for Maggie but for me, my family, and my friends.

I will access any mental health support I am offered to enable me to be the best version of myself for my children and my own sake. As such, I have accessed psychologists from both the Sheffield Oncology and Birmingham Retinoblastoma service, which has helped with cognitive behavioural therapy, coping mechanisms, and specific worries and questions.

As I had a period of sick leave immediately following maternity leave to support Maggie and attend her appointments, I have received counselling through my workplace occupational health mechanisms.

But their help is generic, and as anyone who has been in a similar situation will know, dealing with cancer is a different entity than generalised anxiety and stress.

CHECT has been a lifeline for us, and I genuinely owe the charity my sanity, but the team of two in-hospital support - one in London and one in Birmingham - shouldn’t be and can’t shoulder the mental health of patients, survivors, parents, and carers.

Mental health is a huge side effect and consequence of an already terrifying situation, and there isn’t enough mental health support for families.

This needs to change. The support we receive as a family, or I have received as an individual, has at times been wonderful, but it is sporadic and limited. I’ve had a bumpy life and have learned over the years ways to make sure I swim through storms rather than sink.

Sadly, many people will sink, and it shouldn’t be this way, nor should I need to fight so hard to be strong.

This is why I’m backing the Daily Express’s Cancer Care campaign, as all patients and their families should have access to mental health support both during and after treatment.

Maggie is now four years old and has just had surgery to inject chemotherapy into her eye socket to treat the cysts that keep growing but we don’t know for certain yet if it has been successful.

She has regular monitoring on the cyst on her pineal gland, and she has regular examinations under anaesthetic (EUA) to check for new tumours in her right eye.

She needs a new prosthetic but we have to wait for her socket to heal from surgery. She has good vision, albeit monocular, but we don’t know for certain until she’s older the extent it will affect her day to day life.

She has been affected emotionally from the trauma in many ways from self-esteem issues from being stared at and commented on constantly to being distressed if she doesn’t have a trusted adult in close proximity at all times.

She doesn’t like change and she’s beginning to show signs of oppositional defiant disorder, most likely due to the significant lack of control she’s had. She will no doubt need mental health support when she is more able to articulate her feelings but we’ll have to see what the future holds.