BBC3, Tuesday 19 April 2011
Featuring Jono Lancaster
This documentary is a follow up of the BBC3 series 'Love Me Love My Face', which first introduced the public to Jono Lancaster, 26, who suffers from Treacher-Collins syndrome.
Treacher-Collins is rare genetic condition that leads to outer part of the ears being abnormal or almost completely missing, hearing loss, a small jaw, a large mouth, defect in lower eyelids and cleft palate. It can lead to babies being unable to breath. The symptoms can range in severity.
Jono was rejected by his birth parents when he was just a few hours old, and was then adopted. Jono also experienced severe bullying growing up over the way he looked. The effect of Treacher-Collins on Jono and his relationship with his partner Laura was covered in 'Love Me Love My Face'.
This show came as a pleasant surprise from a channel that usually bring us shows of the calibre of 'Hotter than my Daughter'. The documentary was surprisingly informative, and the issues were handled in a sensitive and respectful manner. A wide range of options for parents and various perspectives on them were explored.
The documentary followed Jono and Laura as they explored the idea of starting a family, and the consequences of Jono's genetic condition. Jono's statement at the beginning of the documentary perfectly captured the moral dilemma: 'there is an answer and an argument for everything'.
The documentary explored the options available to Jono and Laura. These included IVF with PGD, adoption or conceiving naturally. Jono and Laura started by visiting a Genetic Counsellor in Harley Street who explained both the inheritance of genetic disease and the process of PGD.
There was a 50/50 chance of passing the condition on if the couple conceived naturally. The councillor explained the process of IVF with PGD – the stages of ovary stimulation, egg collection, sperm sampling, mixing, and the screening of eight-cell embryos by removing one cell and testing it for the carrier gene. Jono decided to have a blood test to identify the carrier gene, which is necessary for the PGD process.
Throughout the documentary Jono struggled with whether the process of PGD and screening against Treacher-Collins devalues himself and those with disabilities. The couple are introduced to three other couples who are or have been in similar situations.
The most emotional and interesting meeting was when they meet two-year old Maisie who suffers from severe symptoms of Treacher-Collins. She needed two tubes to breath and eat which had to be changed daily. Witnessing Maisie's parents doing this was shocking, particularly for Laura.
Jono and Laura were introduced to Shona and husband Mike, who were using PGD to screen for Myotonic Dystrophy. Shona and Mike had already successfully used PGD to conceive their son Dexter.
Laura, after seeing Shona go through the process of PGD, preferred the idea of conceiving naturally and then using Chorionic Villus Sampling (CVS). CVS is a very accurate antenatal test that detects chromosomal abnormalities. If the tests show the embryo was affected, the parents can decide whether to continue with the pregnancy.
Jono was very distressed with this idea. He believed if his birth mother had used CVS he would not have been born. Jono was very interested in adoption, particularly as he himself was adopted. However, Laura was not keen.
Laura accurately captured their quandary, after they had decided that their best option was to try PGD, when she said: 'It might not be morally right, but it is right.'
Overall the documentary was extremely thought provoking. It was very patient focused, while still being informative on the medical procedures. The personal and ethical dilemmas of PGD were sensitively handled and I would highly recommend this documentary.