Tamsin and Andrew – Cleft lip and palate
Tamsin and Andrew have a son born with bilateral cleft lip and palate. They first became aware of their son’s cleft lip at their 20-week scan, although he had been closely monitored since their 12-week scan as it was suspected he had a genetic syndrome.
Tamsin trained and worked as a secondary school music teacher. She is married to Andrew who works as a project manager for an electrical contracting company.
Tamsin become a stay-home mother when the couple’s first child was born with bi-lateral cleft lip and palate with a suspected genetic syndrome. They first learned of their son’s cleft palate whilst Tamsin was pregnant it was at her 20-week scan. However, the baby had been monitored closely since the initial 12-week scan because it was discovered that he had a small nose bone a sign that is associated with Down’s syndrome.
At the 20-week scan Tamsin and Andrew were referred to the cleft unit at the hospital the same day, and they were told that it was a solvable problem. The cleft nurse rang them within 24 hours to discuss the diagnoses and what future treatment would involve. They were glad that they found out beforehand so they could prepare themselves the best they could. However, they were trying to find answers. Tamsin and Andrew were thinking about it all the time, so they looked on Google, even though the doctors say “don’t do it”. The couple put in all of their son’s symptoms and it came back with “some really rare and nasty syndromes”. They also found that there was a lot of complex medical language but they treated the information they got from the internet very carefully.
The medical specialists gave them conflicting advice regarding the severity of their son’s condition. One geneticist told them that he wouldn’t be able to “access society and might end up being a vegetable” and they were also made aware of the 24-week cut-off for termination. However, another hospital said it was just a cleft lip and palate, so the couple sought a second opinion through the support of their midwife.
Tamsin and Andrew’s son was born full term and because he had a cleft palate was unable to breastfeed. The cleft nurse team came within 24 hours and taught them how to use the special bottles. The midwives on the maternity unit were very cautious of using the bottles without the guidance of the cleft service. Tamsin and Andrew’s son was also taken to the SCBU (special care baby unit) for 2 and a half days to get his feeding started with a nasal gastric tube and to check that he was generally ok. The cleft nurse taught them how to use the syringe and bottle-feed their son – he had the muscles to suck but did not have the suction due to the cleft palate, so they had to encourage him to suck and also to breath. Consequently, the bottle feeds took a long time and, with the addition of expressing breast milk, became an exhausting experience, especially for Tamsin.
Tamsin and Andrew’s son had had his first lip repair at 5 months and this was done in two stages. He was due to have it done at 3 months but he had a cold so it was delayed to 5 months and subsequently his second lip and palate repair operations were delayed. Before the lip repair Tamsin and Andrew were scared about how their son’s face was going to change. But after the operation they got on with looking after him and having to clean the wound. He bounced back quickly and he was smiling again: it was a different smile but it was a really wide, big smile. Their son is now 18 months old; he is happy and socialises well with other children.
Finally, although the care of Tamsin and Andrew’s son has been “so good” and the health professionals were “amazing”, there have been times when they felt that the communication from and between the different services and hospitals could have been better.