November 17, 2015
Every year on Christmas Day, about 30 members of our family gather together at my mom and dad’s house. One of our annual holiday traditions is to “adopt” a needy family and buy them clothes or other items. This year, we’ll also be raising money for Lurie Children’s, through the hospital’s Hope for the Holidays campaign. Why? Because Lurie Children’s is the best thing that ever happened to us.
Our son, Christian, was born ten days before his due date at Silver Cross Hospital
in New Lenox. My husband, Jason, and I were beside ourselves with excitement to finally meet our “little man” after an almost perfect pregnancy.
But as the doctors and nurses worked on Christian, he looked over at me, and that’s when I knew something was wrong. I’m a teacher, and I’m around children with Down syndrome quite a bit, and I saw it in my son’s eyes. Then they handed him to me, and all I could do was kiss him and love him.
A few hours later, the pediatrician came in and told us that not only did they suspect that Christian had Down syndrome, he also had a heart defect, and needed to be transported immediately to Lurie Children’s 40 miles away for care.
The took me to the nursery so I could hold Christian one last time. Various family members were there, and we all sat in a circle sobbing. I kept thinking, “How could this have happened? I did everything right: I ate the right foods, I did all the genetic testing. All signs pointed to a perfectly healthy baby boy.”
About two hours later the transport team arrived to take Christian to Lurie Children’s. Jason followed them and spent the night with Christian in the Regenstein Cardiac Care Unit (CCU)
. The next morning I was discharged from Silver Cross, and as soon as I got to
Lurie Children’s Christian’s team of doctors came in to talk to me and asked if there was anything I needed. They were focused not only on Christian but on the entire family. Jason and I were first time parents, and all the doctors were very calm and reassuring. The kindness they showed us was just amazing.
Christian was diagnosed
not only with Down syndrome but with an atrioventricular septal defect
, a common condition in newborns with Down syndrome. He had holes between the chambers of his heart and malformed valves that controlled the flow of blood between the chambers, causing extra blood to flow to his lungs. To correct the problem, he would need open-heart surgery
Just as our baby was about to be released from the hospital, doctors discovered he also had a urological defect
that caused urine to back up into his kidneys. That, in turn, caused one of his kidneys to fail. Christian would have to get by with one functioning kidney.
During the weeks that Christian was in the CCU, we received nothing but compassion from his caregivers. We also liked that his various specialists all talked with each other to coordinate Christian’s care. For example, while he was asleep for a urological procedure, his cardiologist
scheduled a heart scan at the same time.
Christian finally came home on July 22, 2014 — two and a half weeks after he was admitted to the hospital. He had regular follow-up visits with Lurie Children’s staff at the hospital’s outpatient center at Silver Cross
near our home.
When Christian was four months old, we returned to Lurie Children’s for his open-heart surgery. His surgeons created a patch in the missing wall of the heart, which will grow with him and help the oxygen distribution throughout his body. Currently, 17-month-old Christian has regular follow-ups with his cardiologist, urologist and kidney specialist
, as well as weekly physical
We owe Lurie Children’s everything, which is why we’re participating in the Holiday Campaign and have participated in other fundraising events for the hospital. Lurie Children’s is a place you think you’re never going to need until something happens to your child.
We also know that having a baby with Down syndrome isn’t a life sentence, but a blessing. Christian is one of the happiest little boys you’ll ever meet. He’s always smiling, and he rarely cries. He’s just such a joy to be around, and we can’t wait to see all the ways he is going to change perceptions about what children with Down syndrome can achieve.