Kalvin, born 2005

Kalvin was born on May 22, 2005. We were completely shocked and devastated to learn of the CHDs at his 20 week ultra sound. Once we were under the care of Children's Hospital, Boston, Kalvin's prognosis improved and we were filled with a new sense of hope. Kalvin was born at 38 weeks, weighing 10 pounds and was 21 1/2 inches long with d-transposition of the great arteries, a VSD, Coarctation of the Aorta and pulmonary stenosis.

 

A team from Children's Hospital and the NICU at the Brigham and Women's Hospital were outside the delivery room when Kalvin was born. They whisked him away to the NICU when he was just minutes old. And then, when Kalvin was just a few hours old, and before I had even had a chance to hold or see my beautiful baby boy again, I was asked to approve the atrial septostomy surgery.

 

At five days old Kalvin underwent 8 hours of open heart surgery to correct his defects. I remember meeting his surgeon, Dr. Pigula, and asking to see his hands. I knew our future lied in his hands and I wanted to see what the hands that would determine my future looked and felt like. I asked Dr. Pigula what he thought the most difficult part of the surgery would be and his reply was "it is just a lot to do all at once."

 

Once Kalvin was back in the ICU and we were allowed to see him for the first time, he experienced junctional ectopic tachycardia (JET) with a jet rate of over 200/min. Doctors and nurses came running from all corners and surrounded his crib. They worked on him for a while and ended up building an "igloo" around his crib to try and get his JET rate down. The doctors did a great job at making this all seem somewhat routine, but I overheard the doctor telling his students that Kalvin's case of JET was one of the worst they had ever seen. This is when we realized this was going to be a roller coaster recovery and every day would present new challenges. Kalvin came home after 21 days. We were a little nervous without all the doctors and nurses around, but we quickly felt like ordinary first time parents-sleep deprived and concerned with diaper changes and feeding schedules!

 

Kalvin's pediatricians noticed, at his 3 month check up, that the pulse in his left femoral artery was nonexistent and sent us immediately over to Children's Hospital. Kalvin had two catheterizations to correct his COA; one at 3 months and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1cm shorter than his right and also has less muscle mass, but it doesn't slow him down!

 

Kalvin continues to thrive. He is in the 100th percentile for height and weight and doesn't take any medications. He is a vibrant loving little boy who loves boating, playing in the snow, music and going to and playing doctor! He thinks that all the people out there in the world who "help" you are nurses. When we were in a store and were having trouble finding something he told me "go get a nurse to help us!"

 

Story by Kalvin's mom, Kristen - Massachusetts