The Diagnosis

This is an account of how we learned of my daughter Anna's prenatal stroke. I created this blog in order to help other families in our situation. Not only do I want families to know there are others going through similar experiences, but I hope that some of the at-home therapies my husband and I have created can help families enjoy the same or similar success we're having with our daughter.

Anna was born in March 2006 and other than being jaundiced due to dehydration, she was very healthy. The only outstanding issue was that Anna refused to breast feed. She drank from a bottle without a problem and sucked on a pacifier but would not latch on. I pumped for a little while but quickly found myself in perpetual feeding mode. So I gave up on breast feeding and moved on. It still bothered me that there was no explanation for it but after talking to friends and family, I learned that it wasn't as unusual as I originally thought and let go.


The first few weeks consisted of the usual craziness that ensues in the home of a newborn. I was exhausted, overwhelmed, bored and emotional. Life was a blur and the days passed quickly. We found our routine and life went back to 'normal'.

Time passed and we relished in every smile, laugh, coo. But at about four months, we started to question why she didn't seem very interested in toys. This concern grew into worry when she continued to abhor tummy time. I accepted friends' and the doctor's explanation that many children don't like tummy time but in the back of mind felt that something was off.

As Anna grew closer to six months, we started to notice her interest in toys grow but she seemed to only explore with her left hand. She kept her right hand fisted and tended to lean to the right when propped up to sit. At her six month appointment, the doctor didn't notice but suggested a physical therapist or neurologist when we brought it up.

We mulled it over but also didn't want to overreact since we felt that she was improving on a daily basis. She was (and is) such a happy baby and was in such good health, that it never occurred to us that there could be anything significantly wrong.

But by eight months when there was only minimal improvement in her right hand, we decided to see a neurologist. She was cold and brief and scared me half out of my mind. She simply told me that Anna had hyper tonicity in her right arm, needed to start physical therapy right away and prescribed an MRI of her brain.

Yikes! I never imagined anything other than hearing that babies develop differently and that Anna was a bit of a late bloomer. But I went through the motions and scheduled her physical therapy evaluation along with the MRI. They couldn't do it for close to six weeks later so I drove myself crazy diagnosing her on the Internet, asking the physical therapists millions of leading questions and emailing the neurologist with tidbits of information that may lead to an earlier diagnosis.

The therapists were aloof and wary of offering any additional information without a diagnosis. The neurologist was unavailable, leaving me to think the worst of scenarios - mental retardation, cerebral palsy or possibly some kind of degenerative disease that would leave Anna helpless her entire life.

Luckily we had a lot of support from friends and family who treated Anna with the love and appreciation all eight month-olds deserve. Plus, it was the holiday season, so that provided some distraction and time away from the Internet-diagnosing!

Finally, Christmas came and went and the moment we had been waiting for was upon us - the day of the MRI. Everything went well and Anna came out of it groggy but no worse for wear. She was such a trooper considering we had to wait in the hospital for close to two hours and she hadn't been able to eat or drink anything. Not very easy to explain to babies that they can't eat or drink before having a procedure! So at least the scariest day of our lives wasn't a nightmare as well.

We took her home and waited for the phone to ring. When we found out that our neurologist wouldn't be available until January 2 (it was December 28), we grew irritated and nervous. So we called our pediatrician who was available and willing to read the report for us. I still had a good feeling as I couldn't imagine there was anything wrong with my 9 month old who had never even had a cold or a sniffle up to now - how could she have a neurological problem?

The phone rang and my husband spoke to the doctor. I could tell by his end of the conversation that something had been found so I picked up the phone and listened to the doctor tell my husband that our daughter had suffered a prenatal stroke. What?! How could this be? He was optimistic and told us everything that every doctor has told us since - it's the best time to have a stroke, all it takes is a lot of physical therapy and she would eventually overcome it and catch up with other babies/kids her age. No need for more tests, no special doctors, hospitals, just lots of physical therapy. They acted as though she had broken her leg, not suffered a stroke before she was even born.

On the one hand I was relieved that the doctors seemed so nonchalant. On the other hand, I felt tremendous guilt and went through every moment of my pregnancy that I could remember. But Anna was already enrolled in therapy twice a week and we were already administering it on our own at home so the test just reinforced the need and reason for it. It really told us nothing more - we were already doing what needed to be done. So we looked on the bright side that nothing else needed to happen other than lots of discipline. And we tried to accept what was and move on.

But that rational thinking still didn't take away from all of the unknown - the worst part about most conditions. But this begins the second chapter of my story, which I will leave for another time. Until then. . . thank you for reading.