Two mothers have shared the struggles they went through and their victories to breastfeed their babies with cleft palate.
Leanne Web never lost hope despite doctors discouraging her to breastfeed her son, Casey, who was born with a unilateral complete cleft, causing a gap that ran from his nose through to the back of the roof of his mouth and all the way back to the soft palate.
“How he looked was the last thing on my mind, my only concern was how am I going to feed this baby. Every one of the staff were negative about breastfeeding him. I was devastated,” she told Kidspot.
Having breastfed her first child, Leanne knew that breast was best for Casey, especially in his condition. “There are a lot of allergies on both sides of the families, including dairy so I didn’t want him having formula. Cleft babies are also very prone to infections and illness so I thought breast milk would help protect him,” she said.
Leanne began expressing and dropper-feeding Casey, as doctors kept pushing her to supplementary feed Casey, then she found a special cleft teat and fed him from a bottle when they returned home.
Casey has a palate operation at seven months, and that’s when she and lactation consultant Bridget Ingle, who specialises in cleft palate babies, who she met early on, decided on giving breastfeeding a go.
Leanne dropper-fed Casey again for about three to four weeks following the surgery. Once Casey’s mouth had repaired from the surgery, Bridget and Leanne waited until Casey was extremely hungry and hooked up a supply line and nipple shield, because Casey was only used to sucking from a plastic nipple, but he wouldn’t take it and eventually gave up, and slept, but Leanne persisted and tried again as soon as Casey woke up. “He wiggled and squirmed and then he started drinking. My perseverance had paid off,” she said, crying at the memory.
Then Leanne eventually withdrew the supply line so that Casey was sucking directly from the breast. “I got the biggest let down. It really was like a miracle. My dreams had come true. Everything I had been doing was leading up to this moment. I had done it and I finally had my beautiful baby to my breast. I felt a complete sense of freedom. To be able to go and do what I wanted without nipple shields and supply lines and needing a fridge,” she said.
Leanne continued to feed Casey until he was three years old.
Same as Leanne, Jeanette Loxton also pursued her dream to breastfeed her cleft baby, Rebecca, also her second child who was born with a collapsed lung and wasn’t diagnosed with a cleft palate until day three.
Fortunately, Jeanette was still feeding her older son, Rowan so after pumping each morning for Rebecca she would then feed Rowan.
For the first three months, Rebecca was fed with a nasal gastric tube and special bottles.
Rebecca had surgery to repair the cleft at nine months, then Jeanette spoon fed her and then used the supply line and nipple shield.
Two months later, a miracle happened.
“One night when she was 11 months old it was cold and I didn’t want to get out of bed to hook up the supply line so I just put her on the breast and to my amazement and utter delight she fed and never went back on the supply line,” Jeanette said.
Rebecca is now almost three and still breastfeeding.
Bridget said about one in 600-700 babies are born with a cleft defect and it is important to encourage mums during pregnancy who know they have a cleft baby, to seek the help of a consultant and become informed about their options.
“It is a long haul and requires mums to keep up the milk supply but it is very doable and requires giving babies the opportunity,” she said.