I'll take your 2020 and raise you a new baby with a rare disease
Kelly Mezzetta writes about the challenges her family faced with a newborn in hospital during COVID-19
This First Person article is by Kelly Mezzetta, an Ottawa public servant and mom of two including a newborn with a rare disease. For more information about CBC's First Person stories, please see the FAQ.
After a healthy quarantine pregnancy, our family was excited to welcome a baby girl this past December. Big brother was even given dibs on naming our new baby Vallie.
But, just 24 hours after her birth, baby V could not keep anything down, started vomiting bile and was rushed to CHEO. To add to the ridiculousness of 2020, it turns out our girl was born with a life-threatening condition: total colonic Hirschsprung's disease, an illness that affects the nerves in her intestines. Lucky us.
The good news is that it's treatable with multiple surgeries. The bad news is that it's meant the last few months have been a struggle, dealing with a lengthy hospital stay complicated by pandemic restrictions that have turned our family's life upside down.
With 10-year-old brother Enzo waiting anxiously at home, our family quickly went from a joyous reunion with a newborn to being torn between our children, as COVID-19 hospital restrictions meant we had to leave one to be with the other.
Confusion over the rules did not help. One day, my son would be approved for a visit on Christmas or his birthday, then the policy would change. One day they would promise a day pass to bring Vallie home, then a new staff member would say something different. We never knew what to expect, and ultimately, we were stuck in hospital week after lonely week.
Christmas in hospital
Then Christmas came, and with my husband having to work and my son at home, we had no choice but to leave Vallie there on Christmas Eve, surrounded by wrapped gifts to show her Santa had not forgotten her. Leaving her that day was the hardest thing I have ever had to do.
I brought treats for the nursing team, begging them to not leave my two-month old alone in an empty ward room. I cried as I left the hospital that night and rushed home to try to keep the magic of Christmas alive for my son, who had already been through so much himself.
Over 30 weeks, we tried to create a normal life for our family. But things just kept getting harder.
Our family physician dropped us after Vallie's diagnosis and we continue to search for a new one. We struggled with logistics like insurance, paperwork and trying to figure out where to purchase feeding tubes and ostomy supplies to take her home.
Five months later, we were finally discharged, and are now struggling to get into a routine with a five-month old who has been institutionalized her entire life.
There are new challenges, such as the lack of nurses with pediatric ostomy expertise who can come check in on Vallie's ostomy bag while waiting for her final surgery in a year's time.
There's also little support within the community, as friends and family are continuously adjusting to new COVID restrictions and lockdowns. Finally, we're still working with insurance companies to see what can and will be covered among the thousands of dollars of supplies we've had to purchase.
We worry about access to medical supplies such as specialized formulas and ostomy supplies that Vallie needs because of her rare condition, but are scarce or discontinued due to the pandemic.
We're struggling to plan for our family's future with questions like, can we both keep our jobs and find daycare for a baby with special needs in the midst of a pandemic?
Personally, I feel like I've gone from being a hands-on mom to a full-time nurse, and I struggle to picture a time when I will be able to prioritize my mental health and wellness.
For other families dealing with medical emergencies during a pandemic, I would encourage them to not be shy to ask for hospital resources that can make a difference. We had no idea about parking passes, complex care specialists and patient experience teams, and these groups will go out of their way to help.
I'm told by other families who have faced this disease that there is light at the end of the tunnel. Now that Vallie is home and the end of the pandemic is in sight, I dream of hosting the large events that I did for my son: huge birthdays and religious milestones that are what our big Italian-Cuban family is used to.
Until then, it's hard to look forward to anything concrete.
As Barb, my favourite NICU nurse put it, ''I get it. Go home. Scream and be upset, but all this baby has are plumbing issues." Agreed, but it still sucks.
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