Navy Strawberry Henderson’s challenging road ahead

Hello, my name is Navy Strawberry. I was born on June 4,2024.

You might wonder how I got so lucky to have the name "Strawberry." I have an older sister who faces some health challenges, including OCA type 1 and vision impairments. When she found out I was going to be a girl like her, she really wanted to be involved. My mom chose "Navy," and my sister picked "Strawberry."

A little bit about me…

When my mom was pregnant with me, she had no idea just how special I would turn out to be. A few weeks before my due date, she received a worrying call and was told she needed to go to St. Michael’s Hospital in Toronto. There, they considered my mom a high-risk case and transferred her to Mount Sinai Hospital, where I was delivered weeks later. After I was born, I spent nearly three weeks in the ICU.

When I was almost 4 weeks old, I became very sick and had trouble breathing. I ended up at SickKids, where doctors diagnosed me with heart failure. They started me on medication to support my heart so I could grow strong enough to prepare for major heart surgery.

I have multiple congenital heart defects (CHDs), one of which is a complete vascular ring, where the main artery of my heart is wrapped around my windpipe and esophagus. I also have a complete atrioventricular septal defect (AVSD), a large atrial septal defect (ASD), a patent ductus arteriosus (PDA), and several other heart issues.

Recently, my mom learned that I have complete heterotaxy syndrome. This means I have two right lungs (mirrored) and two right sides of my heart (mirrored). My organs are not in their usual places, and my spleen is enlarged, which makes me immunocompromised. Currently, SickKids is doing more tests to figure out what's going on with my bowels and intestines, but unfortunately, the situation doesn’t look very promising.

And there’s more…

I have a narrowed esophagus and other gastrointestinal issues that cause me significant discomfort. Because of this, I cry often due to the pain. I’m on quite a bit of medication to help manage everything.

Because of these challenges, my growth has been slow. I need to weigh at least 6 kg before I can undergo my major heart surgery. However, complications with other parts of my body may also require additional surgeries.

My family is seeking help.

The financial strain has been overwhelming since my mom first learned about my medical conditions, even before the heterotaxy syndrome diagnosis. I am a complex case and currently rely on tube feeding. While we are on a waitlist for funding, it takes time to come through. The frequent trips to Toronto for appointments, tests, and hospital admissions have taken a toll on my family.

I also have 5 siblings, and when I’m admitted to the hospital, my mom must juggle both household expenses and additional costs that come with hospital stays.

At the hospital, these expenses include parking, food, personal hygiene items, and, occasionally, last-minute clothing needs.

At home, my expenses include feeding tube supplies, medical supplies, prescriptions (some of which aren’t covered), special formula for fortification, breast pump supplies, storage containers and bags for breast milk, and the frequent trips to Toronto—among many other things.

Any help you can offer would be greatly appreciated. At this point, we don’t know when things will calm down, as it’s been a non-stop battle for our family.

Will Continue to update everyone.