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"Bringing together families and children living each day with the trials and triumphs of Hypoplastic Left Heart Syndrome." (c) This on-line "group" was started by Shannon & Becki, two moms of children with HLHS, in June of 2002. You can see Cameron & London in the photograph to the left. They were both born in 2000, and with both of them, their "special hearts" were not known before birth, despite ultrasound. In 2002, Shannon & Becki met at a local CHD support group meeting. Shannon remarks "I was floored. The head of the support group introduced us, like any other casual introduction.... 'Brian and Shannon, this is Becki and London'. 'London has HLHS also.' I couldn't believe it. London was about the same age as my son, Cameron. I couldn't believe that there was another child who lived so close to us with HLHS. The whole time we were going through the first surgeries, we felt like we were the only ones going through this." Their friendship quickly blossomed, and it was because of this friendship, that they decided to start this group. Having a child with HLHS, or any heart defect, can be a very alienating experience. Oftentimes, we realize who our friends and family really are... and aren't. You may realize that the people who are your closest friends, and family members, just can't or don't want to, deal with you now that you have a child with heart disease. Likewise, sometimes people whom you don't expect to, really come forward with offerings of financial, emotional, spiritual or other types of needed support. So why specifically children living with HLHS?? It's true, our group does consist of parents, grandparents, and other family members of children living with HLHS. The reason for this is obvious. Although all of us with children or grandchildren with heart defects are in the same situation, and have much to learn from each other, and can certainly support each other, only those with children of single ventricle children can TRULY understand what we go through. The whole idea of this group, is to have a place where we can go, where we can talk about our kids, without having to explain every little detail, and every medical term. Here, when we talk about HLHS, HRHS, the Norwood palliative surgeries, g-tubes, o2 saturations, valve regurg., etc., we are not getting polite nods, but in fact, it is known what we're talking about, and the people we are talking to, actually have input to our concerns and questions, and can relate, from their own experience. Single ventricle defects cannot be "fixed". The repair merely makes the most of the heart they were born with. In the case of transplants, there are still life-long risks, medications, and tests to name but a few. It is this daily life, this careful management, which makes a group like this needed. Our children's doctors don't have answers for us. They don't know how long our children's hearts will last, whether they are Norwood corrected, or transplanted, but what is known, is that the friendships we make here, will acompany us as we make our way down this path 'less traveled'. |
| POETRY CORNER Twas the night that you joined us...all eyes were on earth. Awaiting with joy for a most special birth. The angel's stood ready...for each need and care, But all of them knew... that the Lord would be there, And I labored on... and daddy was scared, We waited...and wondered... and hoped we'd prepared. We knew you were special...but so very sick, Yet hope had grown in me... with every kick. And soon it was time...into this world you came, I heard a soft cry... then I called out your name.... And God held your hands...while the angels stood by, Since I could not hold you...they hushed your soft cries. One small angel looked to the father and smiled, "Can you truly teach hope... through such a small child"? "An infant so helpless...a baby so new... "Oh please tell me Lord...is this what you will do"? God looked from the angel...to the baby's sweet face, "Through him my young charge... they will learn about grace". "I penned this child's journey...quite a long time ago, "And through his great courage...such true love will grow". "Every hair on his head has been numbered you see.." "It's my hope that through him... they will learn to see me. "Oh my little one with a special heart..." "Great love will see you through.." "See look that is your family.." "They've been waiting for you.." "I send you to their waiting arms...for a time we'll be apart.." "But I'll always be with you...for I live within your heart. And so we held you in our arms... And thanked our Lord above.. In you...we see the miracle, of His undying love. So when it's Christmas morning, And I watch my children play, I'll need no great reminders, For I see my gifts each day. Stephanie (Mommy to Braeden, HLHS) |
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| Hypoplastic Left Heart Syndrome (HLHS) is rare but serious. It is the most common cause of death from heart disease during the first week of life. With surgical repair or a heart transplant, about 70% of children born with HLHS live at least 5 years. In infants born with HLHS, the left ventricle and the aorta are small and underdeveloped. The left ventricle is the lower-left chamber of the heart and is responsible for pumping oxygen-rich blood to the body. The aorta is the artery that receives oxygen-rich blood from the left ventricle and sends it through the body. When the left ventricle and the aorta are too small, they can't supply the body with enough blood. Also in HLHS, the mitral and aortic valves are often narrow or absent. The mitral valve acts like a door that opens to let blood into the left ventricle. The aortic valve lets blood out of the left ventricle. Without these openings, the left ventricle is shut off from the rest of the heart and the aorta. That means the left ventricle cannot pump any oxygen-rich blood into the body. Instead, the oxygen-rich blood returns to the right side of the heart through an atrial septal defect (ASD), a hole in the wall that divides the right and left sides of the heart. In newborns, the atrial septal defect lets oxygen-rich blood reach the body because blood can pass from the right side of the heart and into the aorta, without going through the left side of the heart. The right side of the heart pumps blood into the pulmonary artery, and then a channel called the ductus arteriosus connects the pulmonary artery to the aorta. The ductus arteriosus is an important pathway in the fetal heart, but it closes in the first few days after birth. Until the ductus closes, oxygen-rich blood enters the right side of the heart through the atrial septal defect. The right side of the heart then pumps blood into the pulmonary artery, and the ductus arteriosus lets blood flow into the aorta. The aorta carries this oxygen-rich blood to the body. This means that for the first few days after birth, the baby may seem normal because oxygen-rich blood is reaching the rest of the body. But when that ductus closes, oxygen-rich blood no longer has a way of entering the aorta. When there isn't enough oxygen-rich blood reaching the body, the baby's skin may turn blue. This is called cyanosis. Once this happens, the baby needs surgery or a heart transplant right away. How is it treated? There are two options for treating HLHS. One is heart transplantation, and the other is a three-part operation called the Norwood procedure. The survival rates for heart transplantation and the Norwood procedure are about the same. In most cases, the Norwood procedure is used because of the shortage of donor hearts for transplantation. The three steps of the Norwood procedure are: The stage I Norwood procedure. This surgery needs to be done soon after birth. The aorta is connected directly to lower-right chamber (the right ventricle) so the ductus arteriosus can be closed. The stage II Norwood procedure (also called the bi-directional Glenn shunt). This is usually done when the baby is about 6 months old. The superior vena cava, which carries oxygen-poor blood to the heart from the upper part of the body, is connected to the pulmonary artery, which carries oxygen-poor blood into the lungs. 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 lbs. The inferior vena cava, which carries oxygen-poor blood to the heart from the lower part of the body, is connected to the pulmonary artery, which carries this blood into the lungs, bypassing the heart which would normally pump this blood into the lungs. |
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| Page last updated: May 2008 |
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