Join us this week as Andrea Salazar shares her son’s journey after he was diagnosed with CDH.
Tune in to at 6:00 pm EST, April 26, 2022 to https://www.blogtalkradio.com/cdh/2022/04/26/april-26-2022-guests–andrea-and-martin-salazar.
Listen to archives of the radio show at http://www.cdhradio.org.
Baby boy Rylan was diagnosed with a left-sided CDH during a routine 20-week ultrasound. Rylan’s mom, Andrea, shares, “there was a lot of fear and unknown in the initial weeks and months as we met with new doctors for further testing and to plan the delivery. We didn’t know at the time, but the most important role one of the doctors played was advising us to deliver at a hospital with a world-class surgeon and ECMO team. Our pregnancy was filled with regular appointments and a mixture of fear and hope.”
Rylan would arrive into this world on April 30, 2012. Andrea shares, “during his 79 days in the NICU, Rylan was on ECMO for one week, had his hernia repaired, was on a vent for one month, had a nissen fundoplication and g-tube placement, and various other procedures. He had an incredibly skilled surgeon along with amazing doctors, nurses, perfusionists, respiratory technicians, and therapists. They anticipated every milestone to take months, but Rylan had other plans and exceeded all expectations. The entire team helped navigate us through scary times while they took great care of our son.”
Rylan’s family shares, “Rylan was nicknamed ‘rhino’ by our favorite Neonatologist because of his strength and determination fighting in the NICU – and also because he was the biggest baby amongst all the preemies. The hospital was near the Denver Zoo, so we acquired a stuffed rhino that stayed with Rylan while he was in the NICU and every day thereafter. We still carry the rhino with us on our family adventures.”
“Rylan was a very happy, gentle natured, and kindhearted child even with all of his medical struggles. People who helped care for him in the hospital and through outpatient and home care commented on how happy he was. He was our Smilin’ Rylan!” Andrea shares about her precious son.
Rylan began to have hypertensive episodes and his family keep searching for answers. Two months before his 4th birthday he went to the hospital for a sedated CT, for doctors to get a better picture of what may be happening. Rylan’s mom shares, “he had a hypertensive crisis during a sedated CT and the hospital didn’t have the level of care needed (no ECMO). He passed away less than two months before his 4th birthday.”
Andrea shares, “grief support wasn’t easily available in the community we lived in at the time of his passing, so we began to navigate the journey on our own. Grief is a continuous struggle, but we are determined to live in a way that would make him proud. Now we lean on our support community and those who understand the pain of losing a child. We try to balance finding joy in holidays, birthdays, and special occasions with the sadness those celebrations and milestones bring. Grief to us is constantly and simultaneously feeling opposites – joy and sadness, peace and anxiety, relief, and despair. It is an ocean of emotions that bring tidal waves and tsunamis, often times without warning.”
Rylan loved firetrucks! His mom shares, “he would watch videos on YouTube showing firetrucks with their lights flashing and sirens on and he would mimic the siren. On his 3rd birthday, which was the last we celebrated with him, we went to a local fire station where they gave him a tour and a joy ride (lights and siren included!) around the neighborhood. He absolutely loved it!”
Rylan is also a big brother, his mom shares, “Rylan got to meet his brother Breydan before his 3rd birthday, and they had almost a year together. We believe he chose his youngest brother Liam for us after he had already gone to the other side of the rainbow.”
This Saturday marks Rylan’s 10th heavenly birthday, we will forever remember Rhino Rylan.
If you are interested in sharing your story, visit https://cdhi.org/shareyourstory/.