Having a child with a milk allergy is really, really difficult

Natalie B

Hi, my name is Natalie, I have a three year old daughter and I’m currently 37 weeks pregnant, to have a second daughter. Wasn’t the best journey in the beginning. My daughter has a cow’s milk protein allergy. So, we identified that when she was about six weeks old. Hence, that meant that I needed to eliminate dairy and soya and lots of other things from my diet while I was breastfeeding her. So, that sort of had its added complications in terms of breastfeeding.

But yeah, I knew I wanted to try, I knew I wanted to feed her. I knew the benefits for me, knew the benefits for her. But with a little 37 week-plus-one-day-old baby who is a little bit too jaundiced to wake up and feed, the reality of trying to get her to latch on and feed was quite difficult in the early days. It was trying to – luckily I’d expressed colostrum that time so I was able to sort of give her the colostrum enough to be able to wake her up, to be able to then eventually be able to get her to latch. Yeah, it definitely had its challenges along with a tongue-tie, along with all those other things in the early days. Because she had the cow’s milk allergy, I wanted to try and make sure I was able to offer her breast milk until she was two, as per the WHO guidelines.

So, I always felt there was quite a lot of pressure to express to make sure that she had enough because – as much as there was alternatives out there – for me, breast milk was the best. And I wanted us to be able to have the milk that was sort of made in the right way for her. I do think having a child with a milk allergy and breastfeeding is really, really, really difficult. It’s one of the hardest things I’ve ever done in my life.

You make a lot of sacrifices when you’re a parent, but to also give up dairy milk and Yorkshire puddings and all those types of stuff as well, because you’ve got a child who’s got a cow’s milk allergy, who reacts through breast milk, shows how sensitive that they are because the proteins are obviously quite broken down, first for breast milk, as opposed to formula milk. And I remember the pediatrician sort of given me a tin of formula and saying, I need you to take this home. And I was saying, but I don’t want to give her formula and she said, ‘I need you to have a backup there. If something happens to you, you can’t go to a shop and just buy it in a formula’.

But I suppose for me it’s checking every label, it’s being aware when you go to a restaurant, you can’t just order food, it’s being aware of cross contamination, and also feeling responsible. So, I remember times where when she was quite little, and you’d go to a restaurant, and you’d felt that you’d ordered everything that was dairy free. And at that point, it was dairy free, soya free, oat free, nut free, beef free. And then I’d have a tummy ache when I come home from the restaurant. And I’d be a bit like ‘that food was some level of cross contamination’, because obviously my body doesn’t make the proteins anymore to break down cow’s milk.

So, I’d sort of feel the effects of that as well. And then I feed the baby and she’d scream, and she’d scream, and she’d scream, and you’d feel like you were making the baby sick. I do understand why lots of mums who have a child with a milk allergy would stop because there’s a lot of responsibility and it’s really hard. I think some of the challenges that I faced was more about the professionals who were visiting me and feeling that the advice probably wasn’t always the best advice that I was given. Based on the knowledge that I already had.

I remember being visited by somebody who was coming out to try and help support the baby with latching. The baby was only a week old, maybe. We’d spent five days in hospital, so we’d not been home very long. And she was really jaundiced, and she was really tired.

So it was really difficult to get her to latch, she would often only take one side of the breast, and then she fall asleep. And this practitioner told me to strip the baby down, leave the baby to just cry for a couple of minutes and then pick her back up, and then try and feed her again. But actually, her tummy was that small that actually she was quite content with one breast, and quite happy. And yeah, that meant I needed to feed her more often, because obviously she’d digest that quicker.

But the distress of stripping your baby down and leaving them to cry wasn’t the best advice, and I think it was trying to understand that it’s not a one-size-fits-all. Unfortunately, we were in a position where she was born over the Christmas period. So, obviously services are more restricted.

Obviously, people have holidays and clinics don’t run at normal times. And we also got a hit by an unexpected curveball: when we were looking for a private tongue-tie consultant, there was a stop on all private tongue-ties, there must have been an incident or something must have happened. And so all appointments were cancelled whilst this incident was investigated.

We weren’t even able to go privately, and have to wait until after the New Year period. So, I was lucky because again, I was able to find some good support in the community, and was able to learn how to use a deeper latch and how to latch her without it being too painful, and I was able to carry on feeding until I was able to get the tongue tie snipped.

I think as a practitioner, I always knew it was hard. And I always remember the biggest tip I always gave to mums was never to give up on a bad day. So I always used to say to them, the journey of breastfeeding isn’t easy. But, promise yourself one thing that you never sort of give up and stop feeding on a bad day, always make sure you make an informed choice.

And I feel, as a practitioner, I always had the time for breastfeeding mums. And I’d always make sure that they were supported to be able to make informed choices. Because breastfeeding isn’t for everybody. But it takes a lot of time. It takes a lot of commitment. And it’s really hard work during COVID, particularly during the crisis that we’ve got going on. It’s restricted in terms of obviously face-to-face contact and those types of things.

Whereas, normally you would be able to catch some of those mums and be able to support them and help them be able to carry on feeding. And some mums don’t know what’s normal and what’s not normal. So, I feel that that’s where antenatal contacts come in really well, because actually being able to explain to a mum in antenatally to say breastfeeding shouldn’t be painful, shouldn’t hurt you, you may sort of get that initial discomfort while the baby latches on.

But while they’re feeding, it shouldn’t, it shouldn’t be painful. And if it is painful, it’s probably a sign that the baby is not latched right. And I always used to say to mums you’ve just given birth, and that’s probably been one of the most painful experiences of your life.

And then when this baby is latching on and pinching and it hurts, you probably a bit like, well, that’s nothing compared to what I’ve just been through. Do you just put up with it, but actually don’t put up with it because you’re gonna cause yourself a lot of damage. And as you go along then, you’re going to cause more damage and more damage and it gets unbearable then and you can’t carry on. It should be a painless experience to breastfeed your baby.

I suppose the only advice is that it has to be right for for that mum. It’s a lot of sacrifices, and it’s a lot of hard work and mentally you’ve got to be in the right place to be able to make those sacrifices because you already make enough sacrifices being a parent. But effectively it changes the way that you are so, obviously the way that you can eat and the choices that you can make. And that’s a lot of sacrifice.