The Story of Zoe

Zoe was due on August 18, 2007.  Her brother was born one week past his due date and so, on August 21, 2007, when I showed no signs of impending labor, my obstetrician scheduled an induction for the following day.

On Wednesday, August 22, my induction was started at 9:30 am.  Zoe was born at 3:30 pm weighing 8 lbs, 12 oz and (seemingly) perfectly healthy.

Thursday morning, a lactation nurse was working with Zoe and I because she was having some latching issues.  While we were working on it, Zoe began twitching on her right side. The nurse grabbed her from me, held her firm and the twitching stopped after only a few seconds.  She said it seemed odd, not like normal newborn uncontrolled movement, but stopped rather quickly and so she thought it was fine.  She did tell me if Zoe started this again, to immediately press the call button.  We were fine for the next few hours.

Later that afternoon, my husband had gone home to shower, change clothes and was going to come back to the hospital that evening to visit.  A family friend was visiting and holding Zoe when she started to twitch again.  I immediately pressed the call button and the nurses came running.  They whisked her away from me and off down the hall.  My friend stayed with me, while I called my husband to tell him what was going on.  I don't think he realized at the time how serious it was (I was trying not to make a big deal of it) because he did not arrive at the hospital until a few hours later.

After I called my husband, a doctor came in and began asking me extensive questions about my pregnancy and health.  He said Zoe was having a seizure when they retrieved her from me and they took her down to the NICU for observation.  While in the NICU, she had another lengthy and serious seizure at which point they "loaded her up" with Phenobarbital.  He said I could go down and see her later, but that she was completely knocked out from the drugs.  She spent the night in the NICU and we spent the night in another wing, not sleeping and wondering what was happening with our baby girl.

On Friday, she went down to radiology for an MRI and we were pretty much in the dark about what was going on.  We were told that the radiologist was not specialized in pediatric radiology and that they had forwarded the tests to Children's Hospital of Philadelphia for review and were waiting on word from them. (we later learned that the radiologist at our hospital actually diagnosed Zoe, but they wanted CHOP to confirm and didn't want to alarm us until it was confirmed)  My obstetrician came by to check up on me and offered to keep me in the hospital one more night so that I could be near Zoe.  It was a generous offer, but for some reason, my gut told me to go home, so I asked to be discharged instead.  I am so glad I listened to my instinct.

I left the hospital with flowers and "Welcome Baby Girl" balloons and an empty car seat.  I cannot tell you how empty I felt walking out of the hospital with a carseat and no baby.  While standing out front, waiting on the hospital valet to bring our car around, several well-meaning people saw me with the balloons and carseat and wandered over to admire my newborn.  They would glance down with a smile and abruptly look up, confused.  I weakly managed to utter an explanation, "She had to stay for observation." while barely keeping myself together.

That afternoon, I arrived home, took a shower and had just settled into my bed for a much-needed nap, when the phone rang.  It was the hospital.  They were calling to tell us that Children's Hospital of Philadelphia had called them back and were sending an ambulance and a transport team right away.  They were taking Zoe to Philadelphia.  I was so glad I had the doctor discharge me or I would have been stuck at the hospital another night while my child was forty-five miles away in Philadelphia.

We met Zoe at CHOP and they settled her into a room.  It was Friday night and still, no information was forthcoming.  They have several parent rooms for parents to spend the night, but they were all full, so we stayed a few hours and drove home, only to get back up Saturday morning and drive over there again and spend the day.  Every time I walked through the doors of CHOP, I was overcome with fear and sorrow.  I  couldn't hold myself together and I didn't even know why.  No one was giving us any information- Zoe was still heavily medicated and had been sleeping since Friday afternoon.

On Monday, a neurologist came to meet with us.  She delivered the news that Zoe had suffered a stroke.  They could not pinpoint the exact moment of the stroke only that it had occurred within 72 hours of birth (either before or after) but officially diagnosed it as "perinatal stroke" rather than "neonatal". She showed us the MRI with the dark area of Zoe's brain that had suffered damage from the clot. She said it was surprisingly common- 1 in 4000 births.  They tested for all the other causes, clotting disorder, infections, etc. and determined it was just a random, unfortunate thing.  She said the part of Zoe's brain suffering damage was the left thalamus. Were were given a folder full of information on CHOP's Pediatric Stroke Team and told that since Zoe was an infant, it was hard to know how this would affect her, but if it did it would most likely be through her gross motor skills on her right side.  We were told she might suffer a weakness on that side, but that we wouldn't begin to see this until it became time for her to start rolling over, crawling, sitting up, etc.

We were discharged from CHOP on Wednesday- one week after Zoe was born and five days after she was transported to CHOP with instructions to bring her back in six weeks.  We saw the entire stroke team (neurologist, occupational, physical and speech therapists and a social worker) periodically for the next two years.  They monitored her progress over that time and determined shortly after she turned two, that she had hit all the appropriate milestones and that we did not need to return unless something came up.  Everyone at the hospital was so kind and helpful and were so excited to see all that Zoe could do during her last appointment.  We were told that sometimes, when stroke happens in infancy, the brain is able to rewire itself with other parts of the brain taking over the functions of the damaged parts.  This appears to be what happened with Zoe's brain.

Now, Zoe is a happy, healthy, four-year-old and to look at her, you would never know she gave us such a scare.  We are so thankful our story turned out so well, but many others don't have such positive outcomes.  The fact is, people are still relatively unaware of pediatric stroke.  It can happen at any age and parents and doctors need to be aware of it's possibility and what to look for.  May is Pediatric Stroke Awareness Month and I wanted to share our personal stroke story.  I hope you never have to go through what we went through.  Just remember, kids have strokes too!

If you would like more information on pediatric stroke, you can visit, Stroke.org, The Pediatric Stroke Program at CHOP and Children's Hemiplegia and Stroke Association.

Zoe in the NICU at CHOP (she was still unconscious from the meds)

Here she is starting to finally wake up after a reduction in meds:

awake but pretty jaundiced:

My little pediatric stroke survivor, Zoe, at 4: