Why do some doctors believe that holoprosencephaly is incompatible with life
From Holoprosencephaly
Why do some doctors believe that Holoprosencephaly is incompatible with life?
Doctors often jump to conclusions, and they do so more often with Holoprosencephaly than with other conditions such as cerebral palsy or premature births. It is rare to hear that a child born with cerebral palsy is incompatible with life. The parents will be told of the potential problems, but not that they are incompatible with life or that their life will not be meaningful.
Part of the reason for this misinformation is that a lot of physicians do not understand or appreciate the full spectrum of severity. They do not understand that a child with semi-lobar holoprosencephaly can walk, talk, and understand many things, while other kids with semi-lobar HPE may have more serious problems.
Some children with semi-lobar holoprosencephaly can understand everything you say. They may have severe motor impairments, but have great understanding, they may be very social and an integral part of the family. They can contribute to others, have fun, smile, laugh, enjoy being with other people. Semi-lobar HPE has the greatest range with tremendous variety. Some kids do have close to normal understanding. They may learn to read, walk, talk. Others may have less development.
Most of the textbooks with information on holoprosencephaly are based on autopsies of severe cases, the ones who died.
Often doctors recommend to the parents to terminate the pregnancy if it is found early enough. This may be due to a bias, where the doctor may recommend that since the child is going to have extreme challenges, why go ahead with the pregnancy? They see it as their duty to explain this to the parents. There are a very large number of children with HPE that are sent home from the hospital on hospice care. Other doctors may not want to treat a child with holoprosencephaly as they believe it may be unnecessary as the child will not survive.
My view is to stay in the middle. If the parent understands what they’re getting into, the risks, and the range of potential problems, I will help them, no matter what. If they want to be aggressive, I will support them, or if they just want palliative care, that is okay as well. Most of the families that see me come because they want treatment. They want to do the most that they can, whatever that most is. I try to help those that choose to go ahead with the pregnancy or those who did not have a prenatal diagnosis.
Dr. Eric Levey, Kennedy Krieger Institute
