Breastfeeding with CMPA

Knowledge is power

When I was pregnant with my daughter Lily, I didn’t know much at all about cow’s milk protein allergy, plus you never think it will affect you or your baby anyway. I feel like you prepare for the birth and go to antenatal classes to learn how to look after and feed your baby in that fourth trimester, but you aren’t always told about allergies and baby ailments like colic and reflux etc. I cannot speak for all antenatal classes, but we certainly didn’t cover how allergies can affect you and your baby. But then how many classes can you go to? Would you remember it all anyway? 

Our breastfeeding journey

It was always my ambition to breastfeed. However, I will not lie, I almost gave up on numerous occasions. Lily was very small and suffered with tongue tie, which made latching very difficult and painful. I used to cry in pain every time she latched, and I found myself holding my breath and counting to ten for the pain to pass. We had her tongue tie snipped when she was one week old, and I had a lovely lactation consultant come round to help with Lily’s latch. She spent all evening with us and I felt a lot more positive afterwards. The pain went away after 2 weeks, and I felt I was able to breastfeed her confidently. Unfortunately, that wasn’t the end of the story for us… 

Lily’s symptoms

I noticed from around ten days old Lily started to develop a nappy rash. Even though I was told not to put anything on her skin or bathe her in the first few weeks. I decided to use nappy cream to help the rash, but it just kept getting worse. It got so bad that her skin was red raw and bleeding and nothing I used would help. She would scream in the bath as the water would make it sting. I went to see the GP weekly and they prescribed me every possible cream – steroid, antifungal, antibiotic – you name it, but none of them worked. In fact, some of them made it worse! I was also told to give her nappy free time to let the air heal the area. Lily hated nappy changes, nappy free time and bath time. She would get very upset, which made me upset. It was unbearable at times and as a new mum I found it extremely difficult seeing my baby in such distress. In the end I just used to cuddle her holding a towel underneath her.  

By the time Lily was around six weeks old, she developed more symptoms. Lily had eczema on her face but more concerning were her dirty nappies. She developed very loose – explosive even – green poo. It had a mucus-like consistency and looked somewhere between mint sauce and green jelly (sorry if you are eating!) This was also accompanied by very slow weight gain, as she would poo everything out and most of the time it was pure water. I was getting very concerned at this point as no one could seem to get to the bottom of her symptoms. The lack of weight gain the hardest, as it made me feel like a failure and it seemed like I wasn’t feeding Lily enough. I then started questioning my milk supply and would get Lily weighed weekly at the local health centre. I will always be so grateful to the kind ladies who worked there, as they were the ones who told me that her symptoms were all red flags for CMPA. Due to her suspected allergy, I was unable to top her up with standard formula and decided to continue breastfeeding and cut dairy out of my diet.  

Going dairy and soya free

I continued breastfeeding with a dairy-free diet and made some other adjustments. I made sure Lily had nappy free time everyday and I used Weleda nappy cream after every change. Although the cream didn’t eliminate the rash, it was the only one that didn’t make it worse. The GP referred Lily at her eight-week check to a paediatrician, but I was told the wait could be weeks to months. By the time Lily was 10 weeks old, I was at the end of my tether. 

I paid privately to see a paediatrician who diagnosed Lily with CMPA and soya allergy straight away. A lot of the dairy free alternatives that I was eating contained soya! The paediatrician prescribed Lily with an amino acid based formula called Neocate to help with her weight gain. I continued breastfeeding whilst cutting out dairy and soya and would top Lily up with a bottle 2-3 times a day. Just like that her nappy rash disappeared within five days, just in time for me to enjoy Christmas.

Gaining confidence

I was really lucky that Lily enjoyed both breastmilk and the prescribed formula; she didn’t seem bothered as long as she was fed. I found that combi-feeding took the pressure off me, and I started to feel happier and confident with breastfeeding again. With the formula my husband was also able to feed Lily, which he really enjoyed. My confidence grew and I felt more relaxed to leave the house and enjoy my time with Lily. One of my first classes was baby massage with Louise in Brentwood, which helped me so much. I met other mums, some who were also experiencing issues or had concerns with their babies, and I felt like I had a support network around me.  

Re-introducing dairy

I was glad that I persevered with breastfeeding despite all of the issues we experienced. With Lily gaining weight, I was able to soak up all the cuddles with the bedtime feed. I knew it wouldn’t last forever and I wanted to make the most of it. I decided to start eating dairy and soya again when Lily was around 9 months old and we monitored Lily for any reaction. That first Dairy Milk is something I will never forget eating!  

Lily was under Oviva, which is a paediatric nutritional service that supports infant cow’s milk allergy and weight gain in babies. Again, I must thank the health practitioners who referred Lily to this service. Oviva advised me to begin a milk ladder when she was 10 months old. Some babies do grow out of it by the time they are one, but sometimes the allergy can remain until they are older. Lily unfortunately still can’t tolerate a lot of it, as it upsets her stomach, but she really enjoys drinking oat milk and has it in her porridge. There are so many delicious dairy free options available now. 

Ask for help

The first couple of months after Lily was born were very difficult and deeply affected my mental wellbeing. I would worry and obsess about how much Lily was feeding and eating until she was around one. It shouldn’t have taken that long to diagnose and I feel strongly that new mums should get more help. Use your local health centre, as they are so supportive. Looking back at my breast-feeding journey, I am proud to have breastfed Lily until 15 months old.

I have found writing this blog has helped me to gain some closure around Lily’s allergy and hopefully it will be helpful for others reading this.