Fetal status is assigned a special status. Even if it means compromising their own well-being, everyone has an opinion on what should or shouldn't be done for a baby's health.
There is a chance that pregnant people will feel pressured to enroll in trials and expose themselves to risks for their unborn child. It could be from inside themselves, from their family, or from society. I have been made to feel bad for eating doughnuts while pregnant and having a c-section. I can only imagine what it would be like to refuse a treatment that a doctor claims could save a child's life.
Fetals are vulnerable to harm. They can't give their consent. How much risk is it worth to expose a fetus to?
Keeping the risks low is obvious. Only treatments that have been proven to be safe in children and adults will be trialed.
Ayla will need therapy for a long time. She could have a cure if she had a gene therapy that allowed her to make the enzyme on her own. There are newer or more experimental treatments for pregnant women. She says that more data is needed to understand the safety and feasibility of the therapy.
There is a balancing act between collecting enough data on experimental therapies and delaying trials that could save lives. In the past, we have been protective of pregnant people and fetus. It might not have been in the best interests of the two groups. Excluding them from research means we don't know anything that might help them.
It is a challenge. Let's hope Ayla's success story is the beginning of many more.
Desperate parents are raising hundreds of thousands of dollars to treat their children with expensive and experimental genes.
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