Rebecca, who lives in Northampton, is a busy stay-at-home mum. She describes her pregnancy with Eliah as “unremarkable”, but she says that early on she felt there was something different about her fourth daughter.
At two months Eliah started having seizures. She was given medication to control this, and then she was tested to find out the cause. “They did chromosomal testing”, says Rebecca. “But they didn’t tell us anything at the time.”
At eight months, Eliah turned mottled blue and started vomiting. She was taken into hospital and she was found to have an enlarged heart. During surgery baby Eliah’s heart arrested and she was given chest compressions to bring her round. She made it through the surgery and was in intensive care for six weeks”, says Rebecca. “After that, every day counted and it felt like a miracle when she reached her first birthday.”
Coming a long way
Eventually, medical detective work revealed that Eliah has 1p36 deletion syndrome, which occurs when a piece of genetic material is missing. Eliah is unable to walk or speak and she is currently fed by a nasogastric tube. Her development is different from other children, but, having just turned 4, Eliah has come a long way. She has been weaned off several of her cardiac medications and now only needs one, and she no longer has epilepsy. Her parents take a positive view of her uncertain future.
“If you looked at Eliah’s life on paper, it could seem like the end of the world”, says Rebecca. “But in real life, it’s not like that. Eliah plays with her toys, loves watching ‘Bluey’, and can be a cheeky little girl.”
So why does the thought of assisted suicide worry Rebecca? “I am really concerned about how assisted suicide will make disabled people even more vulnerable. It terrifies me that people will think that Eliah’s life is a burden to society.”
Rebecca firmly believes in the right to life of unborn children. “During my pregnancies whenever I was asked to go for a screening blood test, I just said no thank you. Screening is so routine. They can’t pick up Eliah’s condition before birth, but if they could and I had been tested, I would have been asked if I wanted an abortion.”
Quality of life
“People aren’t used to seeing disabled children”, says Rebecca. “When I’m out with Eliah, some people look at her with pity, particularly as she has a tube in her nose. Others look at her with disgust. To them it looks like a bleak picture and that my daughter has no quality of life. I worry that people will judge Eliah’s life, especially when she is older. How dare anyone judge someone else’s life?”
Children have a different response to Eliah. “Other children are curious about her”, says Rebecca. “They love playing with her when I take her to the park.
“Her older sisters love her. They are like ‘mini mums’. They can soothe Eliah when she gets upset. And they are in awe when they see Eliah doing something new. It’s: ‘Mum, look what she has done!.’”
Like many parents of disabled children, Rebecca and her husband worry about Eliah’s future. “I can’t bear to think of a time when I am not there to advocate for her”, says Rebecca.
An inconvenience and a cost
Rebecca thinks that assisted suicide will affect attitudes and behaviour very quickly. “We’ve seen how the law on smoking changed behaviour. You never see anyone smoking in a supermarket cafe. Assisted suicide will soon become normal. Eliah could easily be seen as an inconvenience and a cost.”
Eliah very nearly died when she was a baby and needed extensive interventions from specialist intensive care doctors, nurses and paramedics.
“Eliah was clinically unstable for some time”, recalls Rebecca. “But doctors gave her every chance they could. Yet years down the line, if Eliah gets poorly the decision could be made to end her life. Her life could be considered unworthy of care and medical attention. This seems to be such a contradiction; to give up on her when such efforts were made to save her when she was a baby.”
Negative reactions
Rebecca had to deal with negative reactions when she became pregnant with her last child. “Some people were saying: ‘Aren’t you worried?’ We weren’t worried because we knew that Eliah had not inherited 1p36, it was just a random occurrence. It could happen again, but we wanted another baby and now Eliah has a great buddy.”
Rebecca and her husband recently visited a school for children with profound needs. “I was worried about Eliah going to school, because she wouldn’t be able to tell us if she was unhappy there. But we were overwhelmed by how amazing the school was. We were crying when we saw what the children were doing and the wonderful way the staff worked with them. I am now happy about Eliah going to school. She’ll be like her older sisters, with her own friends.”
The positive side
Rebecca is passionate about showing the positive side of having a child with special needs in the family. She is bringing up Eliah the same as her other children. Eliah sits at the table with the rest of the family at mealtimes, she goes out everywhere with the family. “She’s thriving being part of a family where she’s loved. We celebrate every small milestone Eliah reaches. I want other parents to see that having a disabled child is not all doom and gloom. It’s the exact opposite.”
While Eliah is cherished within her family, she is an obvious target in the culture of death. She made it into the world at birth, but, as Rebecca says, assisted suicide is “another threat looming. Eliah is relying on us to speak up for her life. And now’s the time.”
