When we found out that Isla would be born with a cleft lip and possible palate, one of the first things we were told was that she would not be able to breastfeed. My experience of breastfeeding my eldest daughter, Isabelle, two years previously had not been straightforward (she had a posterior tongue tie which was never divided and had lost 16% of her body weight by day 4 so we were readmitted to hospital) so when I found out I was pregnant this time, one of the things I was looking forward to was a more positive breastfeeding experience. It took me a very long time to come to terms with the idea of potentially not being able to directly breastfeed but once I did, my research began!
My first port of call was my local La Leche League group leaders who have been an unbelievable source of support to me. We discussed the various possibilities and that if Isla ‘only’ had a cleft lip breastfeeding may be possible. Palate involvement made it more difficult, if not impossible, as there is a lack of suction but it would depend on the severity. At around 34 weeks we discovered during a 3D scan that Isla’s palate was most definitely involved.
I began to look into exclusively expressing. I was told by a healthcare professional that although it was a possibility, it was unlikely that I would be able to completely fulfil her needs and she would require formula top ups. That has stuck with me to this day and at almost 10 months old, I can say that is most definitely not true!
My whole pregnancy felt completely out of my control and this was the one thing I could do. I spent weeks researching different types of breast pumps; considering motor life, speed settings and added extras (my Spectra has a fancy light – handy for not waking everyone during the night and for toddler entertainment!) and eventually settled on a Spectra S1. I also bought a hands free pumping bra and a lovely friend sent me her nursing cover (not something I would have used had I breastfed directly but it has made me feel more confident pumping out and about) …. I was ready to go!
We had an appointment with our specialist cleft nurse at 34 weeks to create a feeding plan. I’d discussed my determination to exclusively express before and knew it was something I wanted to do. My local La Leche Leader had provided me with excellent evidence-based information. We went through the feeding plan with the nurse and noted that Isla was only to have colostrum/breastmilk, not be separated from me unless there were other complications and no one was to use any specialist bottles until she had been assessed for safe feeding by a specialist cleft nurse. After this meeting, I contacted the Infant Feeding Co-ordinator at my local hospital to discuss antenatal expression. We had a very helpful meeting and I began collecting colostrum in syringes at 34 weeks.
By 37 weeks, I had collected and frozen 200ml – a real achievement! My husband was sent rushing home to collect it and my hospital bag (although #1 priority was the milk!) whilst I was prepped for an emergency c-section.Once Isla was born and in the weeks following, I tried to directly breastfeed but her cleft was so wide that she had no suction. Even bottle feeding was a challenge. I continued to express 2 hourly throughout Isla’s NICU stay to mimic her feeds and on discharge had collected this lot as extra:
At this point I was beginning to run out of freezer space and after a phone call to say they had found even more milk in the NICU freezer, I looked into donating some of it. I was still pumping 10 times a day and producing three times what Isla needed. Any attempt at dropping a pumping session caused mastitis (which my La Leche League leader helped me to eventually rectify!) To date, I have donated 83800ml (2950oz) to 7 babies informally through Human Milk 4 Human Babies UK and Oxford Human Milk Bank.
We’ve had a long journey to get to where we are now and it’s been hard – expressing really is twice the work. We have battled through an emergency c-section, initial separation, NICU stay, recurrent mastitis, multiple food allergies, surgeries, hospital stays, bottle/feeding aversion, two periods of nasogastric tube feeding and there have been many, many times where I have sworn that pump will be my last. But every single time I have carried on and every single drop has been worth it. I have pumped everywhere; in the car, on planes, in cafes, whilst working at sling library, at soft play, theme parks, whilst carrying Isla on my back in a woven wrap and of course, our endless hospital appointments!
If you are reading this and expecting a baby with a cleft, you can do it. Don’t let anyone tell you otherwise.
During pregnancy, my main goal was to express for Isla up to palate repair, mainly to know that she had a shorter fasting time and now we have passed that, we will see where we can go!