Kinsley Valerie Rose Bondi was born April 4, 2019, at 30+2 weeks at Cambridge memorial hospital. After my water broke, I was rushed to the hospital and heard the doctor say that her heart rate was fluctuating and that they needed to perform an emergency C section. My baby was intubated and rushed to McMaster Children’s Hospital hours after her birth and my husband, Justin and I spent a few weeks at Ronald McDonald House, which is an incredible place!
My husband and I thought it was just prematurity, but we never expected what followed.
The doctors and nurses were unaware if she would make it through the night and I was told she was a very sick baby. We were also told she has a low muscle tone. They did many different tests to find the cause or diagnosis. Two weeks after birth my husband and I got a call from the hospital at 1:30 am to get to the hospital as soon as possible because her heart stopped and she needed to be resuscitated. We spent another few weeks at Ronald McDonald House. After many tests, the neonatologist asked the neuromuscular specialist to come down. That’s when my daughter and I were both diagnosed with myotonic dystrophy type 1. Myotonic dystrophy is the degeneration and weakness of muscles. But our pediatrician also said the word dystrophy also means that there is an ability to get stronger.
Kinsley was also diagnosed with glaucoma which is pressure in the eye from a buildup of fluids. She had three eye surgeries while in the hospital to open up the blockage, and to put in valves for the drainage and then needed another because the valves were clogged by scar tissue. Her vision is fine at this time but she is on medication and keeping an eye on it with our ophthalmologist at Mac. She also had surgery to insert a G-Tube into her belly and she is fed through that using a pump.
Three months after birth, she came off intubation and went onto a CPAP. We were very hopeful she would come completely off ventilation and she was close. But then in October of that year, we were told that she was working too hard to breathe and that it was hindering her development and that a tracheostomy was the best choice. In November, our baby had her tracheostomy surgery. After receiving the trach, she seemed happier and to have more energy. In our pod at McMaster NICU, Kinsley was one of five babies with a trach. After her surgery, we were overwhelmed with all the things that were involved with taking home a ‘trach baby’. We started our three-month trach training in December, with six people made up of family and friends that were willing and wanting to get trained for Kinsley. We were very lucky to have that much support. Then Covid hit and only my husband and I ended up getting trained.
In April 2020 after her first birthday, we were discharged after 376 days in the hospital since birth. It was so nice to finally have her home but it was an adjustment for us being new parents, having a fragile baby and all the other care that is involved. Also coming home during a pandemic has made it a harder process not being able to have as much support as we wanted.
It has gotten easier with all the progress Kinsley has made. Although we appreciate the doctors and their knowledge, she has defied many of the odds. She is now off daytime ventilation and only uses the vent during nap and nighttime. Kinsley has been gaining so much more strength since we have come home. Although we still have a long road ahead of us, she has been and is still such a happy girl. She loves her dog and they are best friends. I am so thankful for all the support we have gotten to get her to where she is now and we will keep supporting and giving her every opportunity we can. She is the strongest, bravest, most courageous and happiest little girl in the World and we love her more than anything!
Thank you to the wish fund for all the wonderful things you do for children and their families and for welcoming us.
-Daniela and Justin