I was not offered any tests when I was pregnant with my first child. I did request an ultrasound after a threatened miscarriage at 12 weeks because I was concerned there might be a problem, but the request was refused. The only other test I had was an X-ray at 28 weeks to check if I needed a c-section as my baby was breech.
I found out that my daughter had a learning disability when a junior doctor thought I had been told and let it slip by mistake. My daughter was 6 weeks old at the time. I was deeply upset by the news, as I thought she only had a physical disability at that point. It was handled very badly.
When I received the diagnosis I felt total shock, grief and confusion. I was concerned about whether I could cope or not. I didn't know anyone in the family who had a learning disability. I only knew what a learning disability was myself because I had social work training and had attended a series of lectures on childhood disabilities.
When I received the diagnosis I felt total shock, grief and confusion. I was concerned about whether I could cope or not.
We saw a consultant, who was very kind and compassionate, but the senior doctor who dealt with us was awful. He was hard and insensitive, telling us it would costs thousands of pounds to bring up my daughter and implying that it wasn't worth it. I only felt that help started to slot into place when I was given support from the portage teacher. That was a turning point for me - I was being given tools to help my child develop and I started to understand her needs.
I went on maternity leave after my daughter's birth but decided not to return to work. In the end, I did not return to paid employment for 23 years.
After my daughter was born I felt under a lot of pressure from my husband's family to consider having another child. Fortunately, my obstetrician was very clear that I was not to even consider it for at least 12 months. Couples need a lot of support when considering having another child, particularly where there is a genetic or chromosomal risk. I waited 6 years before I felt able to take the risk again.
During my second pregnancy I was offered a lot of support and advice, and my GPs explained the tests and risks very carefully. I received genetic counselling and was offered an amniocentesis, but I decided against this as I had been told of the risks of miscarriage to a normal pregnancy. I decided instead to go for a very detailed ultrasound at 18 weeks. This was repeated 2 weeks later.
From 6 weeks old I felt something was wrong, but I had to battle and battle to get any help for him.
By the time of my third pregnancy I was 38, so I decided to have an amniocentesis. This proved normal, but sadly my son started to show developmental delays and behavioural problems at 18 months. From 6 weeks old I felt something was wrong, but I had to battle and battle to get any help for him, especially as there was no immediate and obvious problem like there was for my daughter.
I met with other mums who had not got a diagnosis, as it was so hard to get any help from the health, education and social services. It was suggested that my parenting skills were at fault and that was why my son was behaving in what was perceived as an out-of-control manner. In fact, his epilepsy was so severe that he was having seizures every 10 seconds.
We had to fight to go to Great Ormond Street. My GP was really good at pushing that for us. The other professionals who were most important to me were the geneticist and a really excellent obstetrician I had the second time around. A colleague also contacted the Association for Spina Bifida and Hydrocephalus (ASBAH) on my behalf, who put us in touch with their wonderful field worker and another parent. That was a major turning point for us.
Initially I turned to my friends and family for emotional support, but it had a massive impact on everyone. Some relatives I thought would be helpful were not, while others were immensely supportive. My parents were great from day one, but my husband's mum and his grandmother were at times very insensitive. The grandparents got no professional help. I think if they had received some support themselves it might have made a difference.
My husband found it hard at work as few people knew how to react, and he got no real support from the hospital. ASBAH were very helpful though. It puts a massive strain on a relationship facing this changed future and we sought counselling to get through this. We also got support from other parents in a similar position through ASBAH and a portage scheme I went to.
We have been life-long friends ever since.
Amniocentesis: a test during pregnancy to monitor a baby's progress and check for the risk of a genetic problem.
Geneticist: a professional with a specialised knowledge of genetics.
Genetic counselling: a meeting with doctors to assess the risk of your child inheriting a genetic problem.
Obstetrician: a professional who specialises in caring for women through pregnancy and birth.
Portage: a professional who works with pre-school children who have learning or developmental difficulties, physical disabilities or other special needs.
Ultrasound: a test carried out during pregnancy to monitor a baby's development