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Welcome to Brett's World

Brett at 10 months after 2 open-heart surgeries & 4 haircuts!

On Feb.18th 2000 our precious son Brett was born by C-section because of a breech presentation. Brett looked like a perfectly healthy baby with lots of beautiful dark hair. Little did we know that around 24hrs.later we would be given devastating news. Brett had just been taken to the nursery that next morning to be examined by the pediatrican. We were told we had a healthy baby, but at the time we were told this, Brett was crashing in the nursery at that very minute! Thank goodness for the watchful eye of a very special nurse named Janet, she noticed that Brett's color was turning ashen & his breathing had become labored. The doctor examined Brett again & detected a heart murmur. He was taken to the NICU to be stablized & for further examination by a cardiologist. It was then determined that Brett had

Hypoplastic Left Heart Syndrome(HLHS),

a combination of heart defects that mainly affect the left side of the heart.The main pumping chamber(left ventricle)is very small & the mitral and/or aortic valves may be narrow,blocked or not formed at all. The Aorta is small & not fully formed & there is a hole(atrial septal defect)between the two collecting chambers.We are told this affects about 2500 babies a year & is one of the most severe heart defects..

Normal Heart

HLHS Heart

The doctors gave us the heartbreaking news of Brett's condition.They told us that a fixed wing aircraft from Kosairs Children's Hospital in Louisville,Kentucky was on its way to come & transport our baby to it's facilities which would be able to give our baby a chance to live. It took the flight nurses,who were wonderful & very kind, 5 hours to stabilize Brett before they could take him to Kosairs.Finally they let us in the NICU to say our prayers & goodbyes. This was one of the hardest things to do because we did not know anything about HLHS, what options we had & if he would even still be alive by the time we would arrive there. I was immediately released from the hospital & along with our families, we made the 3 hour trip to Kosairs. We were met by a team of doctors that had examined Brett upon his arrival. We were told by one of the cardiothoracic surgeons(Dr.Thomas Yeh)that we had 3 options:

1)Compassionate Care

(do nothing & Brett would die within a few days),

2)Heart Transplant

(Brett would be put on a list & it couldn't be guaranteed that a heart would be available in time, also the anti-rejection drugs that are taken for a lifetime lowers the body's immune system & you would have to move within a certain distance of a treatment center),

3)A 3-staged series of operations known as the Norwood Procedure

(the surgeon utilizes Brett's own anatomy to redesign it into eventually a two-chamber working heart whereas a normal heart has 4-chambers;disadvantages are at any given time Brett may become an unsuitable candidate for the next surgery & may become a candidate for a heart transplant).

After talking with the surgeon & pediatric cardiologist, we decided to go with the Norwood Procedure. Brett would have his 1st surgery done at 5days old by exceptional cardiothoracic surgeons, Dr.Erle Austin & Dr.Thomas Yeh.

The first stage is called the Norwood procedure, which was developed in 1979 by Dr. William Norwood. 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.
We were told that the first 48hours after surgery were very critcal & Brett's chest would have to remain open for a few days(5 days to be exact) to allow for the swelling(we could see our son's heart beating inside of him which may seem disturbing to others, as it was to us at first, but it became a comfort to know that it was working & beating). Brett did well & the only little setbacks were his needing an additional chest tube put in because of a leak in his lymph system, a speech therapist to teach him again how to suck on a bottle & reflux,which medicines were given to control it. After 29 days in the hospital, Brett was finally released to go home!

Brett 7 days after his 1st surgery

We had to return a week later to his wonderful pediatric cardiologists, Dr.Juan Villafane & Dr.Frances Vega-Arrillaga, for his check-up. His heart was working great, but in May, at his 3mos.check-up, it was discovered that Brett had scar tissue in his aorta causing some blockage. A balloon angioplasty was done by pediatric cardiologist, Dr.Recto, & at first it was successful & Brett was released the next day, but a week later they noticed that the scar tissue had come back. They did not want to operate,so they tried again a month and a half later, this time with a bigger balloon which was successful.

In October at 8mos.of age, Brett had his 2nd open-heart surgery-

The Bi-Directional Glenn.

This procedure 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 second stage is performed when the pressure in the baby's lungs has decreased, no longer requiring the pumping action of the right ventricle to get blood into the lungs.
This surgery was not as risky as the first surgery, but it still was a scary time for us. The hardest part was handing over our baby again to be operated on & praying that everything would go as planned. Brett did exceptionally well & was released 4 days later!

Brett continues to do very well. He will have to have his 3rd surgery around the ages of 2 or 3.

the Fontan

This procedure allows the rest of the blood coming back from the body to go to the lungs.

You would never know by looking at him(except for the scars on his chest)of everything that this little fighter has been through! He is like almost any other baby(other than the fact that he takes Digoxin,Lasix,Captopril & baby aspirin, has to see his cardiologist every few months & is small for his age).Brett is the best thing that has happened in our lives & we would do everything all over again if we had to. He has touched so many "hearts" & continues to bring great joy in our lives. We want people to know that there is hope for these babies & to let other new parents of HLHS babies know that there are success stories out there. We know that with Brett's future surgery still to come that we will have to go on the emotional roller coaster again & the doctors donít know how long the heart can work this way without tiring out. They think these children will probably have to have a heart transplant, and some have already & are leading good lives. We will cross this road with Brett when we come to it, but for now we will enjoy our time with him & be inspired by his wonderful presence. As we see how our son has thrived & enjoys everyday, it will be well worth it!

We would like to thank everyone for their prayers for Brett & our family & the donations that we have received that has helped us immensely.We would also like to thank our friends & employees at my families place of business for all their hardwork on the fundraiser they had for Brett. Many thanks to Chrissy at Early Childhood Development for visiting Brett & tracking his development progress. Also the wonderful staff at Kings Daughters Medical Center where Brett was born; because of their quick response to Brett's condition, it gave him a better chance of survival! A special thanks to the wonderful staff at Brett's cardiologists, who has an extreme amount of patience during Brett's memorable visits. Also the Ronald McDonald House of Louisville,Kentucky that has provided our family a wonderful place to stay! Please support your local Ronald McDonald House-we don't know what we would have done without them. And of course, all the exceptional staff, nurses(Kelli & Barbara, who explained Brett's surgeries & kept us informed during the procedures) & doctors at Kosairs Children's Hospital in Louisville,KY.,who we can't thank enough!

God Bless You All!

We are forever greatful to our families that have given us great strength & support in this time of need. We could not have gone through this with out you all!

We Love You!

Brett 2 weeks before his 1st birthday!

Brett at 5mos.

Christmas 2000 & 2001

Elmo is always by Brett's side!

Happy 1st Birthday Brett!

"Who let the dogs out Brett?"

Congenital heart defects are the #1 birth defect. In the USA alone, over 40,000 babies are born each year with a congenital heart defect.That translates to 1 out of every 115 to 150 births!To put these numbers in perspective,1 in every 800-1,000 babies is born with Downs Syndrome.Congenital heart defects make up 42% of all birth defects. According to the American Heart Assc.,heart defects accounted for 31.4% of all birth defect related deaths. Over the past decade the funding for heart defect research has been drastically cut! For every dollar that is provided by the national medical funding arm of the American government, the National Institute of Health(NIH), only one penny is provided for pediatric research, with only a portion of that penny going to support research on congenital heart defects, the most common birth defect! As more children with heart abnormalities are successfully treated, research is needed to meet the needs of these patients as they reach adolescence & adulthood. Please let your local & state government officals know about the need for more funding for congenital heart defect research & please sign up to be an organ & tissue donor-you never know when you or a loved one will need to benefit from a precious donor. Please join us in remembering those affected by congenital heart defects on C.H.D Awareness Day on Feb.14th. Our mayor of Ironton,Ohio has just signed a proclamation for Feb.14th as Congenital Heart Defect Awareness Day. Thank You Bob!

Proclamation signed Feb.7th 2001

Mommy(Missy),Daddy(Ron),Brett & Mayor Bob Cleary

Kingsbury Elementary School balloon launch for CHD day Feb.2002

these wonderful children also collected thousands of pop can tabs for Ronald McDonald House

The Legacy of Life is an American Heart Association campaign to raise $1 million for congenital heart defect research. When they meet their goal, these funds will be invested and the Legacy of Life endowment will be created. This endowment will provide a perpetual funding source for congenital heart defect research Ė the most common birth defect and the leading cause of death from birth defects during the first year of life. Please click on the above link to learn more & donate.

Click on the gold hearts to see Brett's friends that are also affected by HLHS.

This Hypoplastic Left Heart Syndrome Net Ring
site owned by Missy Tipton-Leonard.

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Click on the Elmo button to see Brett's special Elmo page!

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We would like to dedicate this webpage to those that are fighting a congenital heart defect & to those that have lost their battle

Brett's patch for the CHD Quilt Project

Favorite Links:

"The Congenital Heart Info Network" for CHD info
"Baby Hearts Press" for HLHS & CHD info
"Left Heart Matters" for HLHS info
"Website of quilts being made honoring those affected by CHD's"
"Little Hearts" for CHD info
"Nascar driver Rusty Wallace"
"Visit Elmo & his friends at Sesame Street"
"Ronald McDonald House Charities"
"Ronald McDonald House" Louisville, Kentucky