Reynauld's and Breastfeeding - My Story (Guest Blog - by Nicola Williams)

Updated: Feb 24

For the first few days after my son was born, we had trouble latching, but the problems didn’t really manifest until a couple of weeks later. The pain from breast feeding gradually worsened and my little boy began to lose more and more weight.


I remember many panicked nights phoning the 24 hour breastfeeding support helpline because my son would not suckle properly. During the day, to gain access to support it meant driving for at least 30 minutes because so many support groups had closed due to funding in our area. The only help available was at the hospitals, and although the midwives we met with tried their best to help, the support was inconsistent and left me more confused. Each time I was shown a new way to position him, we would seem to have cracked it, but then we would arrive home to find we were struggling again. Every time I lost more and more confidence. I felt like I was spending the time I should be bonding with my son desperately seeking help.


The pain eventually became excruciating. Everyone kept telling me it would get easier and that it always hurts at first. But I felt I was constantly in tears, dreading the next feed. Was I just soft? Why could everyone else cope and I couldn’t? I always considered myself quite stoic when it came to physical pain but I couldn’t cope anymore.


I felt like I was failing everyone. I had wanted to be a mother for so long, he was my absolute miracle, but I couldn’t even provide him with his basic needs. He was losing weight and whenever anyone called him ‘small’ I broke down. My anxiety was intensifying and my guilt was consuming me. I felt so fearful that my anxiety would unsettle my son and so guilty that I was not constantly happy. My husband and my son were my whole world, I felt so grateful, so why were there dark patches at the brightest moment of my life?


One day my friend mentioned I could try contacting the Cherubs breastfeeding support group who offered face to face support, though just outside my catchment area. This one-on-one support was such a turning point for us. The Support Worker said our latch looked okay on the surface but it sounded as though feeding was not efficient so proceeded to check my sons’ mouth.



This led to us being referred for an undiagnosed tongue tie and, on discussing my pain, they asked me if I had ever suffered from Reynaud’s disease. I have suffered from Reynaud’s for over 10 years but had never expected it to affect my breastfeeding, especially as we were now in the warmer months of the year. However, they explained how it could be worsening the pain and that pain from vasospasms were going to be more severe in the presence of nipple trauma from the poor tongue tied latch.


So we made a plan to get the tongue tie sorted, and that for the time being I would try to self-manage my Reynaud’s pain. Until I was able to get my pain under control I decided to exclusively express. I had been concerned about expressing a lot because so many people had warned me about nipple confusion when using a bottle. I didn’t want it to be the end of our breastfeeding journey, but Cherubs reassured me that nipple confusion was in fact quite rare and that it was never too late to try breastfeeding again. It was the confidence I needed to take back some control. I think a lot of my anxiety was the uncertainty of what to do, concerned that any decision I made would be definite when in fact this was not the case.


To try and self-manage my Reynaud’s I incorporated more ginger into my diet, the properties of which are to dilate blood vessels and enhance circulation (Fleming, 2017). Further to this, I used a hot water bottle in the evenings, and purchased some woollen breast pads which were more insulating than my regular non disposable ones. I also stopped using my milk to heal any nipple damage caused by poor latching. Using expressed milk on damaged nipples is often advised to mothers as a healing remedy by midwives and breastfeeding support workers, but the evaporation of milk cools the area triggering vasospasms , instead I used a warmed non-lanolin based balm as an alternative .


Exclusively expressing was exhausting and it went on longer than I was intending as the tongue tie revision did not mean the end of my pain. Expressing brought relief to know how much my son was drinking but it was so hard trying to keep up with demand. It meant I was resigned to the seat next to a plug in a constant cycle of feeding and pumping. Hearing my son cry for milk whilst I was still expressing the next meal was heart wrenching. I couldn’t keep up. It was isolating, and the feeling of failure started to creep in again.


I was unsure if I should be adding in formula, I wanted to exclusively breastfeed but ultimately, I wanted my baby fed . I felt conflicted with what the best thing to do was, whether I was being stubborn and selfish by trying to continue to breastfeed exclusively, or was I doing the right thing in the long term by persevering. Until I made a decision it felt like a huge weight on my mind. I felt relief in talking things through with my partner, it made feeding our decision, doing what was best for all of us, not just my burden. So we bought a box of formula ‘just in case’ and that helped take some pressure off. I sought help on a breastfeeding forum and a wonderful lady lent me her hands free pump which allows you be more mobile. This pump had its issues but it helped me get ahead, gave me back some time to actually be with my son and meaning I never had to use the formula.


I also started to use a sling to be able enjoy an uninterrupted closeness with my son. Many people spoke about the bond whilst breastfeeding and I was so scared we would miss out on this, but the truth is that bond is there whether breastfeeding or not. There are so many other ways to connect and feel close. Our way , which we still do today, is walking in nature chest to chest, and co-sleeping, I will always cherish this together. Whilst bottle feeding too I would hold him close and kiss him and making eye contact and just enjoying those quiet minutes we had together.


I kept mentioning Reynaud’s to the midwives, and GP but their knowledge of the syndrome’s connection to breastfeeding was lacking. Instead they concluded the pain was simply my son relearning his latch, and as my pain continued I was treated for thrush which my results later concluded I did not have.


So for several months we exclusively expressed until finally I went back to the GP as I was starting to get pain on expressing too. I again mentioned Reynaud’s, this time equipped with some articles the Support Workers had guided me to. Luckily my GP was very modest, and was apologetic to the gaps in knowledge with regards to Reynauds and breastfeeding. I was started on a prescription for nifedipine straight away, a medication licensed to relieve the symptoms of Reynauds that is safe to take whilst breastfeeding.


After four months of expressing I had pretty much accepted the fact breastfeeding directly was never going to happen for us. However, my son began teething and nothing I could offer would provide him with relief long enough to help him settle. I recalled what the Support Workers had said about it never being too late to restart breast feeding and I tried again. I was amazed and in tears, my son latched beautifully and I had no pain. I could not believe it. Four months down the line, with the tongue tie sorted, medication for Reynaud’s on board, and improved latch we were there, breastfeeding as though we had always done it from day 1.

We are now coming up to 7 months and still exclusively breastfeeding with no real plans of when we will stop, I am just taking each day as it comes so grateful of everyday we have breastfed. As we enter the colder months I am still getting some discomfort from the Reynaud’s but nothing like it was before, and I am monitoring this and my medication dosage with the GP.


Our journey was hard but I was fortunate to have had the support from some amazing people. My wonderful husband who will have been just as worried as me remained calm and rational and supported me every step. I received support from friends and family, but also from kind-hearted strangers when reaching out to other mums, and of course the Cherubs Support Workers who helped me get to the root cause of all my issues. Some mums sadly will not have the same support network , especially now that so many infant support groups are closing down due to lack of funding. It makes me extremely sad to think that someone might have to stop their breastfeeding journey because of this, and that they would have to do so feeling an unjustified guilt.


Every mother has the right to choose how they feed their baby, and that choice is right for them and their family, but when that choice is taken away it can have a dramatic effect on your health and mental wellbeing.


I hope this article goes some way to helping someone else. I cannot stress enough the value of one-to-one support from an experienced breast feeding support worker. Please know you are never alone and when you have your babies best interest at heart you are never failing whatever the outcome, you are simply finding a path that works for you and your little one.


Whether formula, breastfed or combi-fed mothers need access to support. Having a baby really is the most beautiful and surreal experience but it is also a very vulnerable time when you have the most precious responsibility on your shoulders, no parent should have to go through that alone.


So please remember:

  • Its never too late to try and re establish breastfeeding

  • Try not to put pressure on yourself, easier said than done but the fact you care already means you are the most amazing dedicated parent to your little one.

  • Keep talking and don’t shut yourself away, talk to other parents and you will find more people than you realise will have had their own struggles.

  • Try to get face-to face support


For more information about Reynaud’s disease and breastfeeding as well as articles which may be useful to provide your GP with please visit:

https://www.sruk.co.

https://kellymom.com/bf/concerns/mother/nipple-blanching/

https://breastfeedingnetwork.org.uk/wp-content/pdfs/Raynauds%20and%20bf.pdf

https://pediatrics.aappublications.org/content/113/4/e360

Resources I also found useful for exclusively pumping and medication advice whilst breastfeeding:

https://www.breastfeedingnetwork.org.uk/drugs-factsheets/

Facebook page: Exclusive pumping research by Fiona Jardine

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