The ultrasound above was taken about a month before Lila's mom and dad were faced with the decision to terminate her life. They had heard her heartbeat. Her little face and body can be seen forming even here just before 20 weeks. She often reacted by moving to music. Yet, at 22 weeks, a single blood test suddenly had the potential to label Lila’s life worthless.
Said by a respected scientist:
"Given a free choice of having an early abortion or deliberately bringing a Down child into the world, I think the moral and sensible choice would be to abort."
Is it sensible to terminate a life based on the prediction that the baby may have struggles? Is it moral to label people with Down syndrome a "drain on society" and decide they shouldn't be born? Don’t typical children struggle with tough medical issues?
A decision such as this is best left to the parents after they’ve been able to gather balanced information based on the health of the baby at the time. Unfortunately most parents in this situation only get one side of the story.
In the US, about 70% of parents faced with this decision choose to terminate their baby’s life. Other countries have managed to eradicate Down syndrome altogether.
Lila's parents only got one side of Down syndrome. They had never spent significant time with a person who had Trisomy 21. They had never even met a family of a person with Down syndrome. Lila’s mom and dad only knew that a blood test had said Lila would probably have something called Trisomy 21, and according to the doctor, their unborn baby would suffer for her entire life.
With little information or experience to help them, Lila’s mom and dad were faced with a life-altering decision. They wondered if they were being selfish. They grieved the loss of the ideal life they’d dreamed for their child. Was it “moral and sensible” to end this pregnancy? Was it more loving to end her life before she had the chance to suffer? All of these thoughts overwhelmed Lila’s mom and dad.
Despite those doubts, Lila’s parents also knew that they made her purposefully, that she was alive and moving, otherwise healthy and forming normally. They couldn't end her life because of what “could be.” Ultimately, they decided against what the doctor had offered, and Lila’s entire family has been forever changed by a sweet girl who is so much more than the medical books say she can be.
Lila’s story is exactly why we can’t ever quit spreading awareness. New parents, recently shocked and grieved by an unexpected diagnosis for their unborn baby, are often advised by doctors to terminate pregnancies because it is “moral and sensible,” when neither of those things is necessarily true.
We have to give these new parents the whole picture. Yes, people with DS do have a probability of facing challenges that others may not face. But these challenges do not affect all children born with Trisomy 21 and not in the same way. Lila’s life has not followed the bleak outlook that her mom and dad were given.
Many of the health issues that babies might develop are treatable. Lila had open heart surgery as a baby. Yes, it was hard, but her heart is beating strong today. She has a couple issues all treatable by medicine, and she lives a healthy and happy life.
Early intervention of medical care and therapies helps to give children a brighter future. Lila goes to a developmental preschool and receives regular physical, occupational, and speech therapy - all provided by a combination of insurance and a special program of Medicaid (paid for by a monthly premium). Her parents plan for her to go to a typical primary school. She sees specialists yearly for conditions like her thyroid and heart.
Adults with Down syndrome live in their communities, work, and have meaningful relationships. The average life expectancy is now 60 years old.
Here’s what the medical books don’t say:
People with Down syndrome can love in a way that typical people can’t. They don’t see the stereotypes or prejudice.
They are not invalids who sit there and do nothing. They have feelings, likes, dislikes, and talents. They want to work and contribute just like anyone else.
People with Down syndrome may struggle to communicate with you, but many absolutely understand you.
Many work hard to overcome obstacles and rarely complain.
People with Down syndrome are more like you than you think.
Because of active advocacy groups and TV shows like Born This Way, people are beginning to see these possibilities. But with statistics such as a 70% abortion rate, we have a lot of work to do.
People with Down syndrome have personalities, and they overcome obstacles. They have likes and dislikes. They have goals and take part in their schools and communities. Many of them want to work when given the chance. But they can't do any of that if they aren't allowed to be born.
Lila's family and friends are blessed everyday by who she is. Choosing to keep her changed their lives in many amazing ways. Next time you meet someone with Down syndrome, ask them what they like to do; ask them about who they love. You might be surprised to find that a few minutes with them could change your life.