During my first meeting with new families, I also make sure to explain what I do and how it fits in with their other providers. Specifically, as a neuropsychologist, I assess a child’s development, thinking ability, and behavior, and I describe how those areas are affected by his or her medical history. 

My personal experience taught me that patients do not always know what kind of doctor I am or even why they have been referred to me. In addition, remembering how I felt, I try to be thorough without overwhelming my patients. I also assure them that it is normal to feel overwhelmed, especially soon after receiving a diagnosis, and let them know that I will be available for more clarification later, if needed.

While I knew more about all of the severe potential outcomes than most other parents, my professional background did provide me with the advantage of being able to escape my own emotions for at least brief periods of time. In medicine, especially when working with children, you cannot help but experience some emotion. 

However, using your best clinical judgment means that you must learn to focus on objective information without allowing yourself to become blinded by your own feelings. Although I could only manage it for brief periods of time, imagining this child as my patient instead of my son enabled me to think more clearly when my emotions became too intense.

Related Links

• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

Six years ago, my life changed forever...

At that time, I was completing my postdoctoral fellowship in pediatric neuropsychology. I also became pregnant with my first child. Because I had some "inside" information about a few hospitals in the area after having worked in them, although a little farther from my home, I chose to deliver at a hospital with a competent staff and top-notch facilities -- a decision that likely saved my son's life and possibly my own. While in labor, I suddenly went into distress, and my son was quickly delivered via cesarean section. He was whisked away to the NICU before I was even able to see him.

Those of us in pediatric neuropsychology know the hundreds of things that can go "wrong" with a child even before they are born, and the downside of that knowledge is that it can give us very specific things to worry about. However, like everyone else who has experienced a similar situation, I did not really think it would happen to me. But it did. 

My son had a stroke during birth, he needed a ventilator to breathe, and he developed seizures. Unlike parents who question the role that their healthcare providers may have played in their child's condition, understanding that my son's stroke could not have reasonably been predicted brings me peace. I also know that I did not do anything to cause my son's stroke. This is different than the mothers of some of my patients who question every insignificant thing they did or did not do during their pregnancy because it might have played some tiny role in their child's condition.

Although most parents remember their baby's weight and length, the more important information for me was his Apgar scores and the location and extent of brain damage I saw on his imaging. Unlike most people in my situation, I did not have to ask about the potential future outcomes. I had worked with children who had severe disabilities, and I knew it was possible that my son could emerge with significant challenges. However, I was probably less frustrated whenever I was told that his future level of functioning was uncertain.

Having been on the other side of that conversation, I knew it is often difficult to predict what will happen several years in the future, particularly while a child is very young. Although some doctors like to be optimistic about a child's prognosis, others prefer to provide a more pessimistic assessment so that the parents may be pleasantly surprised by their child's better-than-expected outcome. I agree that most people prefer a definitive answer, even if it is one that they dislike, but "I don't know" is often the most honest answer to a parent's question.  

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

About the author

Carla Hearl Morton, Ph.D., is a pediatric neuropsychologist at Cook Children's. She is a licensed psychologist with expertise in how learning and behavior are connected to the development of a child's brain structures and systems. At Cook Children's, neuropsychologists work closely with a team of neurologists and neurosurgeons to provide the best treatments and interventions that meet the individual needs of each child.