The prognosis was positive and we believed it was just a matter of time before we had our baby home.  On the third day, the doctors heard a heart murmur during a routine examination.  An ultrasound confirmed that Katherine has a very rare and serious congenital heart defect – Hypoplastic Left Heart Syndrome (HLHS).  We were devastated as the doctors explained that HLHS involves the underdevelopment of the left side of the heart, especially the left ventricle, which normally pumps blood to the body.  Surgery was her only chance of survival.  We were transferred to the University of Alabama – Birmingham to meet the pediatric cardiologists and surgeons who explained our options – a series of three open heart surgeries or a heart transplant.  Due to the urgency of the situation and risks, we chose the three surgeries.

Katherine’s first open heart surgery was performed on January 21st, 2008.  The surgery and Katherine’s first week of recovery went beautifully.  She was removed from the ventilator after 6 days and continued to breathe on her own for roughly 24 hours before her condition declined rapidly.  While investigating the cause of her sudden turn, the doctors discovered a hemorrhage in Katherine’s brain.  A few days later, another ultrasound revealed a second hemorrhage.  Within days, the blood in the Katherine’s ventricles blocked the normal absorption of fluid and caused her brain to swell.  Katherine was transferred to Children’s Hospital of Alabama on February 11th to undergo a procedure to provide a pathway for fluid to be removed from the brain.

Katherine was finally able to come home on March 7th, 2008 after 7 ½ weeks.  We are all ecstatic to have our angel home.  It has been a long road with many miles remaining, but Katherine is a strong and determined little spirit, so our hopes are high.  Our vision for Katherine is one of a normal, happy little girl who just happens to have a different heart.  We know that God has a plan for our family that will bring us purpose, peace and happiness. Even though we are anxious about the challenges ahead, we look forward to the joys of parenting our two little angels.

In the normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, and then is pumped through the pulmonary artery into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped out to the body through the aorta.

In hypoplastic left heart syndrome, most of the structures on the left side of the heart are small and underdeveloped. The degree of underdevelopment differs from child to child. The structures affected usually include the mitral valve, left ventricle, aortic valve, and aorta.

Perhaps the most critical defect in HLHS is the small, underdeveloped left ventricle. This chamber is normally very strong and muscular so it can pump blood to the body. When the chamber is small and poorly developed, it will not function effectively and cannot provide enough blood flow to meet the body’s needs. For this reason, an infant with hypoplastic left heart syndrome is in a very critical situation.
HLHS is not a survivable condition without major open heart surgery. There are two options:  a heart transplant or a three part operation called the Norwood procedure.  The three steps of the Norwood procedure are:

• The stage I Norwood procedure. This surgery needs to be done soon after birth, and converts the right ventricle into the main or systemic ventricle. 
• The stage II Norwood procedure (also called the bi-directional Glenn shunt). This is usually done when the baby is about 6 months old, and diverts half of the blood returning from the body to the lung. 
• The stage III Norwood procedure (also called the Fontan procedure). This is usually done when the child is 1 to 3 years old, or about 30 pounds.  It diverts all the blood returning from the body to the lungs. 
• Most patients who get through the three stages do quite well.  HLHS children all have to be closely monitored by their cardiologist and other doctors, and most take some kind of medication for the rest of their lives.  

Hypoplastic left heart syndrome occurs in up to four out of every 10,000 live births. The syndrome comprises 8 percent of all cases of congenital heart disease. It is one of the top three heart abnormalities to cause problems in the newborn. HLHS occurs slightly more often in boys than in girls. In many children, HLHS occurs by chance, with no clear reason evident for their development.

Sources:
www.pediheart.org
www.hopeforhlhs.com
www.mayoclinic.org

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Katherine’s Cookbook has over 350 recipes that were contributed by friends and family of Katherine and the moms in this MOMS Club.   Together we raised over 6,000.00 dollars for the Katherine L Fund.  We want to thank everyone who helped us to make this possible.  Katherine is doing very well.

I am sorry, we are no longer accepting orders for Katherine’s cookbook.  We have sold out!!

Thanks for your support.

Katherines Story

My name is Katherine L., and I was born on January 15th. I seemed fine at birth except my lungs were a little weak because I was 4 weeks early, but when I was 2 days old, my mommy and daddy were told that I have hypoplastic left heart syndrome. Please keep us in your prayers.

The first Race for the Cure was in Dallas, Texas one year later.  Twenty five years later, the Komen foundation had raised over 1 billion dollars and is the world’s largest nonprofit provider of funds for breast cancer research and community outreach programs.   Working through a network of affiliates to host events like the Race for the Cure is one of the many ways that funds are generated. Annually, there are over 100 Race for the Cure events nationally and three international events

“The Hoover MOMS on the Move” team has included many of our members and their families.  We have raised over $2,000.00 so far and we are still moving!   We were pleased to make such a significant contribution to a global outreach program that also has tremendous local impact.  The Race for the Cure provided us another excellent way for Moms to help Moms.

For the next 4 years despite her deteriorating health, Alex held an annual lemonade stand to raise money for childhood cancer research.  Alex died peacefully at the age of 8 on August 1, 2004.  She had raised over $1 million for childhood cancer research in her short lifetime.

The MOMS Club of Hoover, AL was touched by this story and we wanted to help continue her good work by holding our own lemonade stand.  We held our stand on April 28, 2007 at the Wal-Mart on Hwy 150 and it was a HUGE success!  In total we have raised $1387.55 for Alex’s Lemonade Stand.  We want to thank everyone that took time out of their day to come and help with the stand!  You helped make our service project a success!