My boys and I ran a trunk load of donation items to the Ronald McDonald House in Wichita, KS today.  They were so excited to help and both boys carried bags in with us.  As promised, I will share with you exactly why we choose to donate to the Ronald McDonald House, and what you can do to help.

Ronald McDonald House Donation

When our oldest son was 2 months old, the doctors discovered that he has a rare, very complex heart defect.  Congenital heart defects (CHDs) occur about once in every 100 births.  That is roughly 1%, and of those 1%, only 1-2% actually have the specific defect that our son has.  Roughly about 1 in 10,000 has his condition.  The only option to save his life was open heart surgery, and none of the hospitals in Wichita offer such invasive procedures.  We were sent to Kansas City for one week for further testing, during which time he had multiple echo cardiograms and a heart catheterization.   After discovering the extent of his defect, they sent us home for one month to get him as healthy and as big as possible before surgery.

A few days after his first open heart surgery, he crashed.  They called a code blue and my husband and I stood watching as they resuscitated our son.  After he was stabilized, we spent another three weeks getting him strong enough to come home.  We were home for 2 days before we went back to Kansas City.  He was in congestive heart failure yet again.  What we came to find out is that during that first crisis, he had ripped the patch between his ventricles (originally 15 mm) back open to 8 mm, and his heart could not handle the additional blood flow.  A second open heart surgery would be required.

When he was 5 months old, he underwent his second open heart surgery, this time to repair the hole that he had ripped back open.  His little body could not handle this second surgery and the next morning his heart stopped beating again.  They gave him CPR for about an hour before they decided to put him on the ECMO machine.  The ECMO machine essentially pumps the blood through the body, out to a machine where it is oxygenated and resent through the body.  A truly artificial {external} heart and lung operation.   He was on that machine for 8 days before he was strong enough to come off.  During those 8 days he had three more exploratory chest surgeries to find where excess blood was coming from.  He was sedated and paralyzed the entire time.  This is him (on the blue blanket in the middle) hooked up to everything on ECMO.

We stayed in the hospital for another month in order for him to be truly strong enough to come home.  In total, we spent about 3 months at the Children’s Mercy Hospital in Kansas City.  The Ronald McDonald House was there for us the entire time, offering us a place to sleep, a place to eat free of charge, as well as a place to rest and recuperate at the end of those long, stressful and emotional days.  We simply could not have afforded to stay in Kansas City the entire time without the house and their assistance.

With his specific defect, he will have to have more open heart surgeries as he grows.  They will need to replace one of his “parts” in his heart with larger parts in order to compensate for his growth.  He has not yet had his first replacement surgery, and the doctors estimate it will be between the ages of 7 and 10.  He is monitored on a regular basis by a pediatric cardiologist here in Wichita.  We will no doubt be staying in the Ronald McDonald House in Kansas City again and again until he reaches adulthood.

The Ronald McDonald House offers families like ours the safe haven of a home away from home.  The families are able to mingle and connect with other families experiencing similar issues.  There is no replacement for the support that they offer.  All of the items used are donated, and we know first hand how essential those are to families during such a critical time.  They need everything from food to toiletries to cleaning products and more to keep the houses running.

If you are just beginning to donate, or if you would like to drop some items off at your local Ronald McDonald House, there are locations all across the country.  Every Ronald McDonald House should have a Wish List available on their site with the items that they are in need of at the time.  This is obviously an issue very close to my heart.  If you are local and would like to check out the Wish List for the Ronald McDonald Houses in Wichita, you can download the file and go through your stash.  I know your donations will be much appreciated.  Thank you!

More Heart Family Resources:

What is a Congenital Heart Defect? Statistics You Need To Know From a CHD Mom
A Letter to My Heart Child on His Birthday
Warning Signs of Heart Failure in Children
Living With CHD: Learning Barriers for Children with Congenital Heart Defects
Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}