Pregnant with our first child, my husband and I went along to our 20-week baby scan, excited to find out the sex of our baby. Not a thought crossed my mind even to consider anything may be wrong. The scan revealed that our little boy had a cleft lip, but they were unable to tell if he had a cleft palate as well.

I left with a whole host of worries, but one overriding concern was that I wouldn't be able to breastfeed him as I had always imagined I would. We were sent up to St Thomas's Hospital in London for a 3D scan to get a better look, and although the scan showed it was likely he didn't have a cleft palate, they couldn't say for sure.

We were put in touch with Clapa (The Cleft Lip and Palate Association), and the nurses were fantastic. They lent us a double breast pump in preparation for post-birth. They also showed me how to hand express. This was invaluable; I wouldn't even have thought it possible to get milk out before the birth. The more I did it, the more colostrum I was able to get out.

The birth and afterbirth cleft lip experience

By the time Caspar's birth came around, I'd managed to build up a whole lunch box full of syringes of colostrum in the freezer. I began this from 32 weeks as recommended by the nurse, but slowly built up how often I was doing it. It's not usually recommended that you do this prior to 37 weeks pregnant as it can bring on labour.

Caspar's birth was a planned C-section in the end. I had a birth pool set up at home but with him going breech last minute, all that went out of the window. Luckily this didn't cause any issues with my milk supply, which came in within the first day. I'm sure it was partially thanks to all the prep I had done hand expressing.

As soon as he came out, I asked the doctors to check for the cleft palate, and to my relief, he didn't have one. Once we were in recovery, I was able to breastfeed him for the first time, and the midwives were fantastic at helping me learn to feed him.

Cleft Lip Feeding — Using some pressure on the back of his head and the ‘rugby’ hold to feed Caspar on the difficult left side

I found that when I fed him on my right breast, it wasn't too tricky as his cleft was on the left-hand side, and the larger part of my breast filled his gap. Feeding him on my left boob however was taking me forever to get him to latch, with both of us becoming increasingly stressed the longer it took.

Staying in the hospital the extra night was by far the best thing I could have done. The midwives were happy for me to call them every time he needed feeding (which was pretty regularly, to begin with) and without their help, teaching me how to get a latch on both sides I'm not sure I could have continued to exclusively breastfeed.

With their help, Caspar even put on weight at his first check, when it’s the norm for babies to lose a little weight.

At home breastfeeding with a cleft lip child

Once we were home, I still had lots of challenging feeds which often left us both feeling frustrated, stressed and upset by how long it sometimes took us to get a latch. Caspar’s Cleft was just too exposed on the left boob, and we couldn't create the vacuum needed for him to suck efficiently.

I learnt that lots of pillows made things easier. The midwives and Clapa nurse also showed me the rugby hold feeding position, how to feed him lying on my side and with him upside down on the boob as well. All were much easier to feed, creating the vacuum he needed to suck. Lying on my side soon became the only way I would feed him on that left side as it was just so much less stressful.

Breastfeeding in public — My first public feed, can you see the anxiety in my face!

Breastfeeding with a cleft lip in public

This was perfect, apart from when I needed to leave the house. Going out made me anxious, I was worried about him needing to feed on my difficult side and me not having the set up I had at home. 10 pillows and being able to lie down is not always the easiest in town!

I always made sure if we were going out that I fed him on the left boob before we left, then I knew I had a good window of time before he needed another feed. If he needed a feed when we were out, I could use the easier boob, and I would try to be home, or in a place I could feed him with the bits I required for the next feed.

All these awkward positions and me panicking about him getting upset the longer it took him to latch meant I took almost zero care over my care.

I would get into awkward positions, hunching my shoulders, twisting my wrists and gripping onto him. All of this left me with awful posture, excruciating neck and shoulders and carpal tunnel.

Losing the suction/latch and the fact Caspar was getting a bit of air in generally when feeding meant he had a lot of wind issues. I found that taking him off the boob mid feed or when he had emptied one boob and was ready for the next one, burping him here really helped.

I would also lie him on his back and bicycle his legs round which was fab for getting farts out and made him instantly happier. Massaging his tummy in a clockwise motion also helped and Infacol was our best friend!

Lip Repair

Picture pre and post op.

At three months, Caspar had his lip repair booked. It felt like such a long time getting to that stage with the worrying that breastfeeding him brought. The operation went well, but Caspar refused to feed for about 4 days after the op. I was panicking that he would never go back to the breast, but he wasn't even interested in milk out of a bottle.

The nurses reassured me that once he was feeling better, he would come around, so I just laid on the bed next to him and offered my boob as often as I could. Eventually, Caspar decided he was ready and wow did his latch feel different. Even that first feed post-op with him still being swollen and numb, I couldn't believe how much stronger his latch was.

It wasn't till his lip was repaired that I realised I had been holding him against my boob to create the vacuum needed for him to suck. After a few days of us both learning how to feed with his new lip, things got dramatically easier. Leaving the house wasn't a problem, I didn't even need all the pillows at home to feed him, and I was over the moon when we took him travelling around America, Canada and Mexico at four months old and I could feed him in the sling while walking around.

Most of all, what I would say if you are hoping to breastfeed your baby with a cleft lip is persevere. Never at the detriment to your or your babies health - fed is always best, don't be disheartened if you need to mix feed or express.

The things that helped me most were -

Hand expressing before birth (check with a health professional if you want to start prior to 37 weeks)
Get as much advice and support from the midwives and Clapa nurses - don't be afraid to press that buzzer in the hospital just ask if you need help.
Don't get disheartened; it takes a while to learn. Breastfeeding is challenging enough at the best of times.
Placing gentle pressure on the back of their head can help create the vacuum the baby needs to feed, just be careful that you're not pressing their nose too much into your breast.
Experiment with different feeding positions - lying on your side, the rugby hold and with the baby upside down can help to plug the cleft lip gap and making latching much easier.
Always feed on the more difficult side before leaving the house.
You're important too, once you have the baby latched, take a deep breath in, sigh out, and on the out-breath drop your shoulders back and down. Draw your chin back and straighten out your wrists, relaxing any grip. You're not going to want to continue to feed if your whole body is in pain.
Wind - cleft babies often get a lot of air when feeding. Burp regularly, during and after feeds—massage babies tummy in a clockwise direction. Use the bicycle motion with their legs to get wind out the other end. Infacol is also a great product to use prior to a feed to help with tummy pain.