Makenzie M. - Quilt Finished in 2009
Born: July 6, 2004
Illness: Hypoplastic Left Heart Syndrome
Makenzie M.'s Story
Written by Makenzie's mom Harmony in September 2008
Makenzie was born on July 6, 2004 at 5:30 pm. We thought we were having a healthy baby. As soon as she was born the nurse made a comment about her being a little blue. They tried suctioning her and her oxygen just wouldn’t come above 91. (A normal person is 98-100) They took her to the nursery where I got to look at her but still wasn’t able to hold her because they didn’t know what was wrong with her. The doctor came in the next day and said they had a cardiologist coming in to look at her so they could rule out something being wrong with her heart. When the cardiologist came my in my room he was holding a piece of paper with a heart drawn on it, I knew at that moment something was wrong with my baby. He explained to us how a normal heart worked and then explained to us how Makenzie’s heart had formed. The last thing I remember him saying is your daughter has a condition called Hypoplastic Left Heart syndrome and she is very critical and needs open heart surgery and there is an ambulance on there way to take her to Children’s Mercy hospital. Hypoplastic Left Heart Syndrome, or HLHS, means the left side of the heart did not develop normally. The left side is the most important and strongest side of the heart with its main job being to pump all oxygenated blood throughout the body. Without medical intervention, 100% of all babies diagnosed with HLHS will die within the first week of life.
I was lucky enough that my actual labor went wonderful and I was able to be released to go to Children’s mercy with her only 15 hours after she was born. Once we got to children’s mercy we had to sit around and wait for ever. Finally we had a resident doctor come out and finally explain to us what is going on with our daughter. He then told us that she will be on medicine keeping a duct open in her heart that closes right after birth and the duct being open is the only thing keeping her alive. They told us that she would have to have a 3 staged surgery. The 3-Stage surgeries reconstruct the heart allowing it to work using only two of the heart's four chambers.
The first stage is called the Norwood procedure, because the left ventricle cannot pump blood adequately out to the body, the Norwood procedure allows the right ventricle to pump blood to both the lungs and the body. This surgery is usually performed during the baby's first week of life.
The second stage procedure, called the Glenn, reduces the work of the right ventricle by allowing it to pump blood only to the body, and allowing most of the blood to flow automatically from the body into the lungs.
The third and final stage, the Fontan, allows the rest of the blood coming back from the body to go to the lungs.
