Maria is married to Andrew and they both work in marketing. Their daughter was born with a cleft palate, but it was not diagnosed until she was 4 days old.
Maria is married to Andrew and they both work in marketing. Their daughter was born with a cleft palate, but it was not diagnosed until she was four days old. The couple discovered their daughter had a cleft palate because she struggled to latch properly to breastfeed. When she was able to get some milk it would run down her nose and the couple realised there was something wrong, but had not considered that it was a cleft palate. Their daughter also had reflux so the couple took her back to the hospital and she was admitted to the special care baby unit (SCBU) where she was fed with tubes. In the SCBU a nurse took a routine swab to check for MRSA and noticed that the swab was going too far back into her mouth – it was then that they were told she had a cleft palate.
Maria and her husband were given a ring binder with information about cleft palate but the special care nurses did not appear to be knowledgeable about the treatment of cleft palate. However, the next working day a specialist cleft nurse visited the family and talked them through the treatment pathway for cleft babies and told them their daughter would need an operation to repair the cleft in her palate. The couple also did their own research on the internet and came across the CLAPA (Cleft Lip and Palate Association) website through a Google search, and this helped them answer some of their questions about the cause and treatment of cleft palate.
The cleft nurse showed Maria and her husband how to use the special squeezy bottles that were provided by CLAPA and they could then take on the role of feeding their daughter. However, feeding their daughter in this way was both time consuming and exhausting for the family. Maria was also very conscious of the prevailing attitude that ‘breast is best’ and the lack of awareness she experienced (from both midwifes and members of the public) that babies born with clefts have great difficulty in breastfeeding.
Marias daughter had her cleft palate repaired when she was 6 months old. The lead up the operation was a source of great anxiety for Maria as she questioned whether it was really necessary at such a young age? However, the operation went ahead, following a general anaesthetic and it took about 4 hours. Maria and her husband found it difficult to re-establish their daughter’s feeding patterns post-operation and it took the family about 6 weeks to stabilise feeding again.
Despite the difficulties Maria and her family have experienced their daughter is growing into a confident child who has good speech and hearing.