Leaving the NICU: My daughter's diagnosis

Anchel continues the story of how her daughter came to be diagnosed with cerebral palsy.

Syona at nine months old.

Last week I started to tell you about Syona’s birth story. It was definitely an emotional experience for me to revisit. I knew I needed to write these two posts consecutively, so I sat down on a Saturday night and wrote. In between writing the last post and this one, I had to take a break and bake some brownies. Seriously. I’m not kidding. Baking helps me relax and refocus and I needed that to share this story. I also ate half the pan — emotional eating at its finest, but that’s a whole other post.

When Syona was born, we were given orders to come back four weeks after discharge for a follow-up ultrasound. So we did. The shadows were still there, but at this point we were pretty confident they weren’t just shadows. So we were sent to SickKids (thank God for SickKids) for another ultrasound. There was still a part of me that thought maybe, just maybe, the results of the ultrasound wouldn’t be so serious. And I had a lot to distract me at home. We had to continue to focus on Syona’s feedings. She was required to drink 37 mL of formula or breast milk at each feed, every three hours. I was still desperately attempting to breastfeed. She wouldn’t latch properly, or when she did latch she wouldn’t suck. Then we moved to bottle-feeding. Finishing the 37 mL would often take her 2½ hours. Then I would pump for 30 minutes, desperately willing my milk to flow, even taking medication. (I pumped for more than four months and never got more than an ounce in a 24-hour period.) And then we’d start all over again. She would spit up all the time. She wouldn’t sleep, except when it was time to feed her. But even though it was tough, I didn’t care. My baby was home. And we were beyond grateful.

Then one day I got a call from a neurologist to discuss the ultrasound findings. There had been a cancellation and they could see us that afternoon, so off we went. And there it was, our first diagnosis from the ultrasound: Periventricular Leukomalacia (PVL). PVL is a specific type of brain damage and increases an infant’s risk of conditions like cerebral palsy (CP).

Even with the diagnosis, I was still optimistic that Syona would escape without much damage. We knew it would be several months before we were fully aware whether or not she would suffer any complications from PVL. We were in a holding pattern, just hoping that our baby would develop and hit the standard baby milestones. A lot of parents asked us how we made it through that time. And the truth is that I didn’t spend a lot of time looking for signs of CP or any other conditions associated with PVL. We were busy.

My mother had been diagnosed with breast cancer shortly after Syona was born (I know, when it rains it pours) and we were just in the process of starting her long and arduous treatment — surgery, chemo and radiation. I’m happy to report that she is cancer-free and back to her regular role as Syona’s babysitter/second favourite adult. Cancer is definitely a distraction when you’re waiting to see if your kid has a neurological disorder.

Throughout Syona’s first year, we knew she was missing milestones. The doctors would ask me if it was tough to change her diaper. (I didn’t know how to answer: Yes, it was tough. She stunk, I was sleep deprived, and she hated diaper changes — screaming from the moment I put her on the change table until she was bundled back up and in my arms.) She wasn’t rolling. She was so stiff I couldn’t even put her into a supported sitting position (she did not bend at the waist at all). But we didn’t have anything to compare it to. So when she was about eight months we started physiotherapy. It was a huge change in our life — mentally and logistically. More time was devoted to specific exercises to get her muscles to loosen up and hopefully help her achieve certain milestones. She would scream and cry through the one-hour sessions, and again at home when we would complete her prescribed routine.

From her eighth month until her 11th month, I think we were mentally preparing ourselves for the diagnosis. And finally in August we got it. We asked her doctor if she had CP and she confirmed it. It wasn’t a shock, but when we heard it out loud, I went numb. After a few days, that initial shock and numbness wore off and we were back to our regular routine. Since we had already been doing various types of therapy, the actions we were taking didn’t change. The tricky thing about CP is that you can’t predict how it will affect the body or a child’s abilities.  

Syona’s now 21 months, and in our first post I told you what she can and can’t do. I’m not sure how that list will change in the next several months, and especially in the next several years. What I can tell you for sure is that my kid is a fighter. She has made it through so much and still spends the majority of her day in a good mood, being a goof and trying her hardest to do as much as she can.

And I believe that I owe it to her, to myself and to our family to follow the example of my little hero.

How have your kids influenced you?

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