This is a story about our son Marcus Alexander Luke and his life with Hypoplastic Left Heart Syndrome.

On October 31, 1996, 2 months before Marcus was born we found out that he had a very serious heart defect. We met with a Pediatric Cardiologist(pc) named Dr. Roy Jedeiken and were given three options.

#1. Compassionate care, take our son home to die.

#2. A heart transplant

#3. Palliative surgeries consisting of three surgeries within the first three to four years of his life.

We chose Palliative surgery.

Marcus was born on December 27, 1996 at 5:45 a.m. weighing 7lbs. 7oz. and 21 inches long. He looked completely perfect, you would never know he had anything wrong with his heart. Marcus had The Norwood Procedure at 3 days of age at Children's Hospital of Los Angeles (CHLA). His surgeon was Dr. Vaughn Starnes, one of the leading cardiothoracic surgeons in the country. Marcus did very well.

He had some problems coming off the ventilator, but as far as his heart it was doing great. After 3 weeks we were flown back to Phoenix Children's Hospital(PCH) in Arizona. Marcus stayed at PCH for about 5 more days just to make sure he could nurse and take a bottle properly, he had absolutely no problems there, he loved to eat.

Finally after almost a month Marcus came home on 1/8 of a liter of oxygen, Digoxin, Lasix, Captopril and baby aspirin. He grew very well and was a very happy little baby. At about 3 1/2 months old Marcus was admitted to PCH in Congestive Heart Failure(chf). It was found that he had a Coarctation of the Aorta (CoA). He had a balloon catheter done and recovered very well.

Two months later Marcus had another balloon catheter, performed by his cardiologist Dr. Craig Cohen, to open the CoA a little more and it was decided he was ready for the second stage of surgery, called The Glenn.

Marcus had the Glenn on August 18, 1997 at CHLA, once again his surgeon was Dr. Starnes. Marcus Had a very rough time. He had an enormous amount of swelling and was really not doing well. Thankfully with the loving touch of our Heavenly Father and the skill of such wonderful people at CHLA, Marcus slowly improved. After one month Marcus finally flew home on September 18, 1997. Marcus celebrated his first Christmas 1997 with his Mom, Dad and big sister Justine. He and his sister had a great day opening presents and playing with new toys.

Marcus celebrated his first Birthday with a 101 Dalmation party. He loved his pinata, which was actually more of a thrill for his big sister Justine. It was a beautiful day filled with friends and family.

On May 4th, 1998 Marcus had a heart catheter and it was decided he should have his third surgery, the Fontan. Marcus was scheduled for surgery on September 10, 1998. We went back to CHLA for his External Conduit Fontan. Once again Dr. Starnes was our surgeon. Marcus was hospitalized for 2 weeks and did great. He has had some arrhythmia problems, but the doctors are hoping it is temporary and just a reaction from surgery. You cannot keep the smile off of his face, he is such an energetic, happy child.

At this point Marcus is 2 years old and a busy, happy little guy. He loves his big sister and enjoys antagonizing her at every turn. He has been an enormous blessing in our lives. His big sister loves to play with him, even though he pulls her hair. They make quite a team. Marcus has taught us about unconditional love and how fragile life really is.

We have learned to cherish our children and to be thankful to our Heavenly Father for allowing us the opportunity to raise them. We were told early on that Marcus would have no quality of life and that we needed to think of our existing family before choosing to try to save our child. Marcus is a happy little toddler. There is always a smile on his face. He is just as mischevious as the next little boy, loves to play with Justine and loves to cuddle with her too. We know there is hope for children born with HLHS. Marcus became a part of our existing family the day we conceived him, and we have never regretted a day of his life.

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