Hear my voice | Kate’s Story

Our Maternity Patient Partner, Kate, is a guest blogger this month and is sharing her maternity story and highlighting her experiences of breastfeeding through allergies.

I’ve been a Maternity Patient Partner for nearly a year, and I’ve loved my role as an advocate for mums and their new families. I’m passionate about maternal mental health and breastfeeding – in particular nursing through allergies – and today I’m delighted to be writing about where these topics overlap.

In 2017, my youngest daughter was born and, following a traumatic delivery with her sister, I couldn’t have been happier to achieve the relatively easy water birth I wanted. It felt like a very healing experience and after worrying about how I’d cope with two small children, I took it as a sign and was very optimistic.

Alas, that only lasted a very short time. Within two weeks of arriving, my poor baby’s face was covered in an angry red rash, which was later diagnosed as Cow’s Milk Protein Allergy (CMPA). I was fast-tracked to visit a paediatric consultant about an unrelated matter which turned out to be harmless.

I had no idea at the time, but it was a serendipitous meeting, because this was the first – and what turned out to be the only – time I spoke to a health professional who knew and understood CMPA.

I’ve written extensively about breastfeeding through CMPA on my blog, and today I want to share the things that mums nursing through allergies want others to know.

We’re proud to do it
At the point of diagnosis, I naturally fired questions about breastfeeding and allergies at the consultant, specifically to do with my diet. The consultant was clear: it was preferable to continue breastfeeding even without cutting dairy from my diet.

Having breastfed my first and having a clear understanding of the situation, I left that hospital and didn’t (deliberately) consume dairy or soya again for 10 months.

This is no mean feat – especially for a new mum. Surviving on insufficient sleep plus cake is basically a prerequisite of early motherhood; forgoing my favourite treats was tough.

We’re happy to do it
While it may sound like martyrdom, I was fully prepared to give up chocolate, cake, ice cream, and pretty much the entirety of my most-loved food group – anything for my baby girl.

And in just four days we saw a dramatic improvement in her skin. Sadly her colic stuck around for considerably longer, and that period was absolute hell.

It’s hard
Living with CMPA is so much more than a different diet:

It’s suddenly accepting anxiety as a bedfellow and having totally insufficient sleep as you battle colic night after night.

It’s feeling completely overwhelmed and helpless when your baby exhibits symptoms that something is still not right – yet help is woefully inadequate, and sometimes non-existent.

It’s being made to feel like a neurotic nuisance instead of being taken seriously as a concerned parent dealing with a very real and legitimate allergy.

It’s a relentless vigilance bordering on obsession, for the possibility of allergens slipping through the net. And the knowledge that nobody else takes the situation as seriously as you do.

It’s exhausting, and there’s no let up.

Weaning is the hardest part
When the time came to begin introducing solids to my daughter’s diet, the anxiety rose again.

Where I’d previously been in complete control (more-or-less) of what entered her system, suddenly I had to contend with the possibility of her eating something that could effectively poison her. And so many family members fail to appreciate the gravity of even ‘just a little bit’.

We need support from loved ones
Reactions might come in the form of explosive nappies, projectile reflux, rashes, breathing difficulties or worse. Depending on the individual it can be mild or extremely severe, and it can be immediate or start later.

Either way, it would make our difficult situations that little bit easier if loved ones were fully accepting of the strict instructions around what our little allergy warriors need to stay safe.

With this in mind, I’ve recently designed and created a food diary for mums breastfeeding through allergies. I hope it will be of particular help for anyone relying on childcare outside of the home.

We need support from the NHS
Following that initial appointment where a consultant diagnosed by daughter, I received zero medical support. To qualify that, I had two appointments I recall where I sought help – the support was nil.

The GP I saw questioned me and my judgement. The subsequent consultant I saw had no understanding of CMPA whatsoever.

Feeling ignored and despondent, I never returned for professional help, since none had been forthcoming. I became a master at doing my own research, and I began to write about my findings.

We completed the milk ladder with no support, and I was so incredibly relieved – it meant I was able to relax a little bit about weaning which had been such a huge stress.

We need chocolate
Finally, if you would like to know the best way to support a mum breastfeeding through allergies, allergen-free treats are very appreciated.

I got used to anticipating a lack of food wherever I went because people would forget, or become complacent about checking and ingredients list might change. So when I visited a particular friend who would always shop for dairy-free milk and ingredients before I visited, and offer me biscuits or cakes that I could eat – I’m not ashamed to admit it made me a little bit tearful.

In a world of uncertainty, anxiety, and fatigue, allergen-free treats are the best way to show us you care.

Healthwatch Essex Maternity Patient Partners have identified breastfeeding as a topic which, working alongside the Mid and South Essex Maternity Voices Partnership, we hope is addressed to support women and their growing families.

If you would like to share your story and experiences, click here to see how you can get involved or become a Healthwatch Essex Ambassador.