Aimee Lybbert, Mother of CHD (Congenital Heart Defect) Survivor, Christian, updates us on his life now and what she sees every day as a “Heart Mom”.
You can catch up on Christian’s story from nearly two years ago here.
Christian will be three at the end of next month. He's been through two more open heart surgeries and four open abdomen surgeries and one surgery through his ribs on his diaphragm. He's now living at Seattle Children's and is currently on the waiting list for a heart transplant.
He has quite the collection of scars. We as his parents do too.
We have been at Seattle Children's for almost 5 months now with most of our time spent in the Cardiac Intensive Care Unit (CICU).
We have seen our share of families and children go through the CICU.
I've seen parents waiting anxiously for their surgery pagers as they wait for any update, I've seen parents hugging surgeons. I've seen rooms that have one little body in the room surrounded by scores of machines and staff working together to get the child through it all. I've seen parents cry with joy as their child had the breathing tube removed and they start to talk again. I've walked past rooms where moms are holding their children for the first time in forever as the nurse takes pictures. I've watched as they get transferred to the recovery floor, and I've watched parents take video of their toddler as he walked out the front door of the hospital after he conquered heart surgery. I've seen such joy at the many triumphs and miracles that happen here.
I've also seen complete and utter despair. Sometimes things don't go as anticipated or as hoped.
Christian was like that. He had several emergency surgeries and he once bled out from a Gastrointestinal bleed and he had to be intubated and scoped while they transfused almost the entire volume of his blood. There were days that I didn't know how I could go on.
When my son headed off to one of his emergency surgeries I was a complete mess and was sobbing in the elevator on my way to the cafeteria. Another heart mom saw me. She asked me my son's name and told me that she saw me crying and couldn't leave me alone like that. She gave me a hug and said she'd pray for me.
She got off on her floor and I kept traveling down. The next day a card arrived with a note and a Starbucks gift card from her.
She had her own troubles and she took the time to look out for another person in need.
There are a surprising amount of kids and parents whose journey includes a hospitalization and or surgery in order to keep their CHD in check. Congenital Heart Defects are the most common birth defect. Approximately 25% of kids with a CHD will require a surgery or other intervention to survive. If you're on the outside looking in the most important thing to do is just to listen and quietly let them know you love them. If you're on the inside of the CHD storm it is important to realize that you're not alone.