I had a late termination for medical reasons last year. My 12 week scan was normal, nothing was found until the 20 week scan, then they found more and more problems every single week, I was also becoming sick due to too much amniotic fluid. My son had two very rare conditions heterotaxy syndrome (1 in 40 000 occurance) and vacter association ( estimated to be somewhere in the 1 in 10 000-1 in 40 000 occurance) both of these conditions have highly variable outcomes, most people with right sided heterotaxy die within 2 years, most people with left sided (what my son had) die by the age of 5, there are a few that survive childhood, virtually none who make it to adulthood. The majority of people who have vacter are able to live good quality if slightly limited lives once they have had their surgeries, the first 3-4 years are the most dangerous and incredibly tough. Some people are much more seriously affected by vacter and will not survive or will have very short lives filled with pain, others will die due to complications from their multiple surgeries. My son was very severely affected with major severe defects in all his organs except his brain and lungs. His spine was also deformed in the lumbar region. We had genetic screening done and did not have a firm diagnosis or a prognosis until 25+3, I had the first part of the tfmr at 25+6 and he was born at 26+3. You cannot have a termination after 24 weeks unless the fetus has a condition that is either incompatible with life or would cause major physical or mental disability, or the mother's life or physical and mental well being is at risk. Two doctors must agree that a termination is justified, there are no named conditions.
My living son was also found to have congenital abnormalities at 20 weeks in his case it was ventriculomegaly and an absent csp both of which are brain abnormalities with an occurance of 1 in 100 000. I had to make a choice for him too, one of his conditions got better during the pregnancy, in a second MRI at 27 weeks the ventriculomegaly had resolved and was at the very upper limits of normal. At this point we were told that termination would no longer be an option for us, we had already decided to continue anyway and it was a huge relief to learn that termination was no longer an option, it meant our son had much better odds of a good outcome. Both his conditions also had a large variation of outcomes. He could have completely normal development, mild developmental delays and learning difficulties or severe disabilities, unable to ever sit, eat or breath on his own, unable to ever have cognition beyond that of a newborn baby. It was impossible to say for sure where he would fall in that spectrum until sometime after he was born, we would not know the full extent until he became school age but the doctors were very optimistic. He is now 4 with normal development.
I am in several support groups for tfmr, the latest I have heard of anyone having a tfmr was 34 weeks, the lady was American and one of the reasons she had it so late was difficulty financing it as well as finding a clinic and a doctor who would allow it. She did not know her baby was severely sick with multiple severe brain abnormalities caused by strokes in the womb until almost 30 weeks. Almost everyone I know who has had a tfmr for t21 has done so between 12 and 18 weeks. I know one person who has had a tfmr for t21 at 23 weeks after previously deciding to continue with the pregnancy despite knowing the baby had down syndrome. The reason she then changed her mind us because she then found out her baby had several major heart defects as well as ds. It is common for ds and heart defects to go hand in hand, around 50% of people with ds have some form of heart defect, in the general population only 1% of people have a congenital heart defect.
I have followed Heidi's campaign although it has made me very upset, I can understand her viewpoint but she doesn't get to decide for other people. She was campaigning for all terminations for medical reasons to be banned after 24 weeks, not just ds. She is also against screening for ds fullstop and has been involved in the anti NIPT campaign. I am relieved by the outcome. I did not want my son to die, o never wanted a termination, it was a heartbreaking decision, the worst thing I have ever gone through in my life. Ultimately I made the choice to tfmr my wanted and loved son so that he would never suffer.
Making a specific ruling to ban terminations for one named condition is a slippery slope to banning tfmr for other conditions and potentially all terminations for medical reasons. If that happens you are condeming many babies to short painful lives and causing huge amounts of trauma to parents, especially mothers who will be forced to undergo labour only to then watch their child suffer and die.