Russ’s antenatal diagnosis
It had been a difficult six weeks. My father-in-law was in intensive care. There hadn’t been space to feel excited about being pregnant and we were emotionally drained. I thought we’d had the all clear at our 20 week scan when the sonographer told us we were having a boy, but then he said, “Have you heard of a cleft lip?” A midwife explained our baby’s cleft lip and palate meant we wouldn’t be able to breastfeed. This was the start of our battle.
A cleft lip or palate happens when the structures that form the baby’s upper lip or palate (roof of the mouth) don’t join together when a baby is developing in the womb. Cleft affects around 1 in 700 babies. Many babies who have cleft lip are able to breastfeed, with adaptations. Babies who have cleft palate can’t generate the suction pressure needed to remove milk from the breast, until the palate is repaired by surgery. The Cleft Lip and Palate Association supports families affected by cleft in the UK: www.clapa.com/
I’d only recently weaned our toddler in preparation for feeding the new baby, so hearing I would be unable to breastfeed him was extremely upsetting. Breastfeeding was a huge part of what I felt made me a mum, and I grieved its loss. A specialist nurse clarified that we could still have some sort of breastfeeding journey, but it might not look the same as with our toddler. We wouldn’t know if the palate was impacted until our baby was born, and if it was, the lack of suction meant breastfeeding was unlikely. She explained that our little boy would have two operations in his first year, one to repair the lip, another to repair the palate, with further surgery later in childhood.
Possibility of breastfeeding
I trawled the Cleft Lip and Palate Association (CLAPA) and La Leche League websites and other sources for examples of successful breastfeeding after palate surgery.
There were disappointingly few, but those I could find indicated that:
- Milk supply needs to be maintained; and
- The baby needs to feed from the breast, at least partially, up until the surgery.
The first point seemed in my control. I’d had a sufficient supply for my toddler, although I hated pumping for her as it only worked on one side and generally didn’t yield much milk. I’d spent months expressing 30, 40, 50 mls at a time, often by hand, in order to build a freezer stash for a weekend away. But I had come back from that weekend with far more milk expressed than I had left behind. With better pumping knowledge, I figured I should be able to meet the milk demands.
For the second point, I read about different methods of direct hand expressing into the baby’s mouth or using a nursing supplementer. The latter seemed like the more practical method for long term feeding.There are two nursing supplementer systems on the UK market suitable for cleft babies. Both have bottles with a thin tube to go into the baby’s mouth to deliver the milk while they are latched on. I bought both to try.
One is gravity fed which results in a very slow flow of milk. The other has a squeezy bottle to deliver the milk. Squeezing with force delivers plenty of milk but the bottle seemed awkward to hold. Most sources suggested feeding using the dancer hold but practising holding a doll in this position along with the bottle felt impossible. Neither of the two systems felt right to me.
The “dancer hand hold” can help babies who struggle to stay attached at the breast, for example because of low muscle tone or prematurity. Your index finger and thumb form a “U”, with your baby’s chin resting on the bottom of the ‘U’. Read more at llli.org/breastfeeding-info/premies-positioning/
Then baby Russell arrived. We fed him expressed colostrum from a syringe alongside a finger in his mouth, to encourage him to try sucking, while we waited for my milk to increase. Our plan was then to try feeding him at the breast with a supplementer.
Some syringes we had ordered had the wrong end for feeding Russ but by coincidence fitted the supplementer tube perfectly. Our midwife team kindly got larger syringes from the labour ward. The ends of these syringes were slightly different but they came with screw-on caps, and with a bit of fiddling I was able to drill a hole in the cap snug enough for the tube to fit in.
Always follow safety guidelines for whatever feeding tools you’re using. If you use a regular syringe to feed your baby colostrum after birth, make sure the cap is removed (as it’s a choking hazard). Feed slowly, and watch your baby carefully to make sure they’re happy with the speed.
The usual advice with a supplementer is to either feed the tube into the baby’s mouth after they have latched, or to tape it onto the breast before they latch, so they take the tube at the same time as the breast, with the tape positioned away from the baby’s mouth. The former felt impossible as, without suction, Russ’s latch was fairly fragile so letting go to feed in the tube wouldn’t work. The latter option of taping means a long section of tube flapping around which you need to get into the baby’s mouth – this felt too fiddly as the newborn mouth is so small and they can bob on and off the breast before latching. I decided to tape the tube very close to the nipple to get the tube into Russ’ mouth easily, so the tape needed to withstand getting wet. We experimented with different tapes and locations, resulting in upset at feeding time from both Russ and me until we found something that worked – albeit with quite a bit of milk lost each feed because the tape compromised the latch.
I sought help from multiple sources, as just like with the doll before, I found it very difficult to hold Russ and the supplementer at the same time. Most people didn’t have the right experience and some voiced concerns such as the potential for aspiration [choking on milk]. Yet again I had to draw on my determination to continue. It had been a long week: the high of a magical home birth; frustration at the difficult feeding moments. But I now had a system that I felt would work well and was capable of delivering a decent amount of milk at a sensible speed.
Positioning to feed
I was still struggling with the dancer hold and we’d both get stressed at each feed. It was tricky to get Russ into the right position and then he would bob on and off repeatedly, struggling to latch. He calmed down if I put him on the other (non-taped) breast and directly expressed milk into his mouth. So I knew he was hungry; I just needed to work out how to help him calmly latch with the supplementer in place.
I had largely fed my toddler in the cradle hold as this felt most natural to me. After speaking with a specialist at Great Ormond Street Children’s Hospital, we decided to stick with the cradle hold as, although this resulted in more milk loss out of the side of Russ’ mouth, it is much more appropriate for a newborn and I was familiar with it. We needed feeds to be relaxed for both Russ and me. I had read advice saying to plug the lip cleft with the breast and some suggestions to keep the cleft side up to avoid milk loss. Whilst both of these seem sensible, we just focused on calm feeds with a deep latch in a cradle position. In those early weeks, feeds ended in both of us being quite wet from the lost milk around the tape. It was fiddly and quite frustrating at times, but it felt worth it.
I feel that we’ve come a long way since those newborn days. I deliver the milk through the syringe when Russ feeds. If he pauses, so do I. We have learnt together to see what rate works best – not too slow that he needs to try to suck many times before swallowing, and not so fast that he is overwhelmed and comes off the breast. If I try to refill the syringe while still holding Russ at the breast, he gets upset that the milk has stopped. So I either put him down or hold him another way so he doesn’t expect milk.
A friend said she had wondered why I was going to all this effort to bridge the gap until potentially breastfeeding after Russ’s palate surgery, but on seeing us feed she said she got it: I was already breastfeeding. Another friend saw us feeding from across a restaurant table and said, “Oh, so the worries about Russ not being able to breastfeed didn’t come to fruition!” Comments like these make me feel so happy I could cry (perhaps that’s the hormones…).
But there were also negative comments. For example, a paediatrician said that the way we feed isn’t what they recommend, because they know the specialist cleft bottles are “safe and effective”. I felt he was implying our way wasn’t. These comments hurt and it takes resilience to brush them off, especially when coming from healthcare professionals. I’m convinced what we’re doing is right. Russ is gaining weight and generally seems to enjoy feeding at the breast. I don’t love that I need to use the supplementer, but I love that we are breastfeeding the best we can and getting all the benefits.
Changes to how we are feeding over time
Starting about ten weeks old, Russ started to be more bothered by the tape in his mouth so we started taping the tube much further away from the nipple, and then not taped at all. This takes a lot of coordination but now that we both know what we are doing it is much more manageable.
Along the way there have been moments it felt we had taken a backwards step and Russ would be upset or refuse to feed. At those times I needed to remember he’s a baby first, and has a cleft second. Was the issue something all babies face? And that is almost always the case, such as becoming distracted around three months and almost refusing to feed if anything else is going on.
Where we are now
Russ is recovering from surgery to reconstruct his lip and hard palate. Once the morphine wore off, for the first few days Russ would only feed from a bottle. When he started feeding from the supplementer again, he rejected bottles. Perhaps he associates bottles with those difficult days, or the supplementer is less work. Whatever the reason, expressing and doing all the feeding can be exhausting at times.
We couldn’t have come this far without the support from my husband. All the bottle-washing, night feeds while pumping and reassurance when times were hard. It’s been a tricky path and we’ve navigated it as a team. Every day that we use the supplementer is a bonus for Russ’s health and our bond, so wherever we get to is better than if we had not tried. And I’m immensely proud of what we’re achieving together.
Sarah Muir-Little
For more information about breastfeeding a cleft-affected baby, see this page.