When my second son Oskar was born, I had been thinking that after difficulties establishing breastfeeding with my firstborn, it would be an easier journey this time.
After a beautiful and quick birth, Oskar went straight for the breast but didn’t open his mouth well and couldn’t stay latched. My breast kept falling out and I had to hold it in place. He also made a funny clicking sound while feeding. All typical signs of a cleft, but at that time no one realised that was the issue. I ended up giving him my colostrum using a syringe and couldn’t believe I would have feeding issues again, but thought, oh well, we would get through it.
During the following week Oskar tired very quickly at the breast and it was clear from his nappies that he wasn’t getting enough milk. Long story short, as a result of this, “suspected sepsis” and RSV, a viral lung infection caught from his big brother, he ended up back in hospital at ten days old.
I agreed with the doctors’ plan for Oskar to have a nasogastric (NG) tube inserted, as he was refusing to take my milk even though it was literally dripping into his mouth. I started pumping so he could continue to have my milk. It was another week before a doctor discovered that he had a cleft (of both the hard and soft) palate. I had never heard of the condition until that day.
A member of the cleft team confirmed the diagnosis, explained the condition and what it would mean for his feeding. She told me that I wouldn’t be able to breastfeed and that Oskar would need to be fed with a special bottle. I was devastated.
As I started reading about cleft palates, I found it overwhelming how much there was to learn and I felt guilty that I might have done something to have caused it. A story online of a cleft baby who had breastfed with a nursing supplementer and had moved on to get all their milk directly from the breast after early surgery to close the cleft, gave me hope and I began researching about breastfeeding cleft babies and different approaches to surgeries.
I insisted on also offering Oskar the breast at every feed as we learned to use the bottle. As I learned more, I was convinced that my gut feeling was right and we needed to find a way not only for Oskar to have my milk, but also to breastfeed.
Breastmilk is less irritating to the delicate tissue in the nose and throat than formula milk and cleft babies often have milk coming back out of their nose. Both breastmilk and the motion of the baby’s jaw while breastfeeding can also help reduce the risk of ear problems later on – cleft babies are more prone to ear infections. Breastfeeding promotes optimal face and jaw development and exercises the facial muscles, all of which are important for solid foods and speech. Children with cleft palates often need speech and language support and dental treatment, so all of these “side effects” of breastfeeding were all the more important for my baby.
First weeks at home
When we finally got home from hospital, we tried to establish breastfeeding in a way that could work for us. I wasn’t happy with the bottle we were using – Oskar was uncoordinated with it. I also couldn’t get used to the NG tube and wanted to get rid of it as soon as possible. In hindsight, this was an unhelpful attitude, as it could have been a lifeline and a safety net and the perfect tool to help Oskar recover while we were learning how to feed. I felt overwhelmed and lost, and after the first week I was scared of Oskar not getting enough milk again.
Two women entered my life around that time: Ulrike, a midwife and IBCLC lactation consultant based in Germany who specialises in cleft babies, and Himali, a speech and language therapist based in London and specialising in breastfeeding infants with all sorts of conditions including clefts.
Himali taught me that women all over the world breastfeed cleft babies, many even without all the special devices I had access to. She taught me an arsenal of tricks that allowed me to breastfeed Oskar even without a device.
Ulrike showed me how to use a nursing supplementer to feed Oskar, whereby he drank my milk from a little bottle that I hung around my neck. I would attach two thin tubes from the bottle to my breast where Oskar would drink this milk (and always a little directly too). The device needed to be adapted for cleft babies, with a hole punched into the top of the bottle, so that the milk would just flow and would not require suction. Another thing I tried was using a nipple shield which collected the milk for Oskar to drink.
I settled on using the nursing supplementer, as it gave me an idea of how much milk he was drinking and I was afraid of Oskar ending up in hospital again. If we had known about the cleft straight after birth and not had the RSV episode, I might have chosen differently.
I also researched pumping and found a lot of helpful information and products (such as bras that helped with simultaneous nursing and pumping) from the USA. I also learned to massage my breasts while pumping and to hand express afterwards to really empty my breasts. My biggest helper though was my older son, who breastfed each morning. Even though he only emptied each breast once a day I believe he helped a lot to maintain my milk supply for his little brother.
By Christmas we had mastered breastfeeding and Oskar was putting on weight. The whole thing was exhausting though, as I was usually pumping and feeding simultaneously, and one feed would usually take an hour or two.
I was living on very little sleep and I had no time to look after my older little boy at all which was heartbreaking. We had, however, been in contact with a cleft team in Berlin about surgery. They followed a different surgical approach and had more facilities than our cleft team in London. This would mean surgery could take place considerably earlier than around a year as initially discussed. This was our light at the end of the tunnel.
New problems arrived on New Year’s Eve when Oskar suddenly refused to drink his milk or would only take very little despite hours trying to encourage him. He became constipated and windy and he wanted to feed even less. We struggled hard to keep him on the lowest percentile on the growth chart for a few weeks. I received an immense amount of help and creative ideas from both Ulrike and Himali, who continued to support me in my wish to breastfeed Oskar. A few weeks later, Oskar stopped feeding again while suffering from bronchitis and was given an NG tube. He recovered quickly, but we kept the NG tube to supplement the milk he was getting when feeding at the breast with the nursing supplementer.
What we didn’t know at the time was that Oskar also had a congenital heart defect, which meant he wasn’t only spending extra calories on feeding because of his cleft but his accelerated heart and breathing rates were also burning lots more energy.
Support, support, support
Support and seeking and accepting help were crucial to our journey. Feeding a cleft baby usually takes much longer than a baby with no health issues and there is also pumping, the never-ending washing up of pumping and feeding equipment and all the normal tasks around life with a baby. My husband supported unconditionally my wish to breastfeed, tirelessly cleaning equipment, coping with the sleepless nights and looking after our older son. Both of our families came from abroad to help, taking it in turn to use their holidays to be with us. My dear neighbours offered to do nursery runs for my oldest as often I was unable to do so because Oskar took so long to feed. I would not have been able to pull through without the support of Ulrike and Himali who were always available for questions and who both had an immense experience to draw upon.
The surgery and afterwards
Oskar was meant to have his cleft repaired at six months in Berlin, but a week before the surgery, my oldest came down with chickenpox, which meant a delay due to the risk of possible complications if he also got it. I fell apart.
With our families’ support we managed to keep going until Oskar had the surgery two months later. It was a scary time, but having learned from before, we kept the NG tube after leaving hospital as a safety net, allowing me and him time to focus on learning how to breastfeed effectively without pressure. Oskar surprised all of us by going directly onto the breast and was able to establish suction. It became clear that he did not need the extra milk from the nursing supplementer so, with support from his doctors, I quickly stopped using it and just practised simply breastfeeding. Initially, he would only manage very short intervals and have to rest several times during a feed for breathing. He also tired quickly and would only feed lying down which allowed him to let excess milk dribble out of his mouth as he was still learning to coordinate nursing and swallowing. Within three weeks of the surgery, with continued support from Ulrike, Oskar was fully breastfed and we could remove the NG tube too.
The year to come
I could not believe that we had managed it. All of us surfaced, started to smile and came out of hiding. We could finally spend and enjoy time together as a family and I felt so proud of our achievement. Oskar has been a fighter since birth and he continues to show me every day that if he has his mind set on something, that is what will happen. I am glad we both had the same idea for breastfeeding.
Now, over a year later I am even more grateful that we decided to go on this journey. Oskar had to have four surgeries during his second year of life for different reasons. He has always recovered and come off the morphine very quickly and coped with these surgeries with no fuss. As I was still breastfeeding him, he was able to have breastmilk up to four hours before the surgery and with night feeds, this meant that his last meal before an early morning surgery could be four hours before without interrupting his sleep pattern. Straight after each intervention, he was able to be with me and get the comfort from breastfeeding and all the good hormones. The milk helped sooth his throat which was sore from the tubes that had been in there to help him breathe during surgery My milk gave him everything he needed in the most digestible form immediately afterwards. No drip providing fluids or medicines could provide this powerful combination.
Anyone who receives the diagnosis of having a baby with a cleft should be given support for feeding in whichever way they choose. Breastfeeding a cleft baby is not easy (nor is it always with other children); it is time consuming and requires a significant amount of knowledge but none of that is a reason for not seeing what is possible. The knowledge exists and finding these sources, experience and support will help and can make it possible. If you want to breastfeed your cleft baby, get the support and give it a try.
Anna, January 2022