My son has HLHS and is now 11 years old. He does all normal activities and to look at him you would never know that he has had multiple open heart surgeries. All my best to other parents and children out there dealing with this heart disease.

Thank you so much for this info. I am 18 weeks pregnant and my son has been diagnosed with Hypoplastic Left Heart. this is my first child and i was scared when I was told this. I was *very* confused. It is nice to know that my son is not alone and I will fight for him every day!

I am 24 years old, I was born with HLHS. I recieved the Fontan and I'm living a fairly normal, healthy life. I will probably make it to 60.

Our daughter was born with hlhs and we had her home for 3 days when she acted funny. when we took her to the hospital, they diagnosed her. She is now 33 months and goes in for her third surgery in two weeks. She is a bundle of energy, and it's hard to believe sometimes she has a heart condition. She also has a g-tube for feeding. We keep our faith with God, and we know all will be well. Anyone who is faced with this decision on the surgeries, choose to do it, every day is precious, and worth it.

My name is Meghan I just turned 18 years old and I have Hypoplastic Left Heart Syndrome. I am doing wonderful. I was a competitive gymnast for 13 years. I am now a free-style skier and high school varsity ski racer, track and field sprinter and pole vaulter and a high school varsity soccer player. I had the Norwood procedure when I was born and the last surgery when i was 2 1/2, and since then I have had no other complications. I have videos from dancing, skiing and gymnastics.

In 2003 my son was born and seemed to be a perfect baby. sadly he died within hours of his birth without warning. his post mortem results showed HLHS. I have recently set up a voluntary organisation to create more awareness of it here in Ireland. We have an on line support site for parents where it's growing fast and within three weeks we are blessed in some ways to have already 40 members. everyone has a story to share and we at the fund want to hear yours. you can make friends on site along with post videos, pictures, blogs and tributes to your hlhs kids. this site is for all the family and we encourage anyone affected by hlhs to join us. we even have grown up HLHS kids on there to help support parents etc.

my little Michael is an HLHS niracle. He was 3 pounds, 3 ounces at birth and weighed 2 pounds, 9 ouncesz for his norwood. his second birthday is just a week and a half away, and he is thriving. he is 24 pounds now and doing great. he has had his norwood, glenn, and his aorta rebuilt. he is awaiting his fontan. his doctors call him their miracle. smallest known (in florida)

Dr Norwood - Children's Hospital, Boston

sorry - I didn't read through all the comments but I wanted to point out the first stage is not the fontan - It's the Norwood procedure. My son is HLHS and had his three surgeries done at the medical college of virginia. The last one being the fontan about seven years ago preceded by the bi-directional glenn (sic).

Sorry! I meant to say in my previous post that when I was 19 weeks along we were told there was a shadow on Twin A's heart. We knew something bad was coming just by the way our doctor's acted around us now. Then when I was 25 weeks along the bomb was dropped! I get ahead of myself sometimes :)

I was 19 weeks along, pregnant with my second and third child. At 25 weeks we were told twin A had a congenital heart condition that was not compatible with life. My daughter had Hypoplastic Left Heart Syndrome. We were told we could terminate the pregnancy but it would have to be immediately, and we would also risk losing twin B, our son. This was just never an option for us. Our second option was called the compassionate care route; we could carry the twins full term and then wait for our daughter to die. I still to this day am not sure why it is called the compassionate route. Our third option was heart transplant. However, most babies died waiting for a new heart we were told. Our last option we were given was a three stage palliative surgical intervention. At the time, the first surgery, the Norwood, had a high mortality rate. We were coached against this and told she would not lead a normal life. That she probably wouldn't live past a year and if she did, she would have severe medical issues. We were devastated, confused and absolutely heartbroken. Fast forward to almost 13 years later, we made the right decision for us. My beautiful daughter, Bailey, is thriving. She takes Coumadin and Lisinopril. That is it. Other than that, you would have no idea that she was born with a deadly heart condition. She is the same size as her twin brother, in the same grade as him and is extremely artistic to his extreme intelligence. I am blessed. She is still here with me. I am not saying that it wasn't a tough road. She fought very hard her first few years of life to be here with us now. But for those that worry, she has no recollection of any of it. Just glimpses of memories from recovering from her Fontan. And not bad memories either. It's my ex-husband and I that remember what she went through and we remember what a fighter she was. I am saying though, that it was all worth it. I am so thankful we gave her that chance to fight. We left it up to her, her surgeon and most of all God. It all seems like a lifetime ago now. My prayers are with all of you just starting out on this journey. It is a long, sometimes terrifying road but try to remember this: once you make your decision, whatever it may be, don't second guess yourself. Ever. You did what you believed was right for your baby. Whatever the outcome may be. Bailey, Twin A: HLHS survivor, Born 1997, 6 weeks premature, 5 lbs 7 oz; University of California at San Francisco (UCSF); Surgeon, Dr. Frank Hanley Norwood, 1.97; Perforated common bile duct, 3.97 (performed by Dr. Harrison); Bi-directional Glenn shunt, 5.97; Fontan, 11.2000; zero issues or problems since then. Sincerely, Roxanne. Thankful mom to three beautiful daughters and one handsome son. Jordon 1990 (healthy); Bailey (healthy now :) and Joshua (healthy) January 1997; and Riley (healthy) 2000.

My little brother is 11 years old will be 12 in May and we have known he has had hlhs since he was born. He is doing fine and a great kid with an enormous personality. There is always hope and will always be. He will live forever just like any normal person. Treat them normal, let them do normal activities don't shelter them from the world and it *will* be ok. He has had problems in the past, but he is such a strong kid he fights through it. All my hope to all of you.

My son is 11 years old and was born with HLHS. He has had the three surgeries and is doing great. He plays rep baseball in the summer and indoor soccer in the winter. Do not give up hope. Good luck and god bless to all living with this problem!

my son is four. He has HLHS. He's had a total of four open heart surgeries. his third was to repair his pulmonary artery that was 100 percent blocked. He had his fontan in 07. He's still having many issues. His left lung is shut down. There are possible clots in his brain and he has a low oxygen level still. He's still on oxygen. He now has obstructive sleep apnea. they took his tonsils and adenoids out. that has not helped him at all. Now they want to do a surgery where they take part of the stomach up and wrap it around his esophagus due to reflex. But they aren't even 5 percent sure this will work. Then the only other option is a trach. He's delayed in speech. He says maybe 20 words but is learning to sign. He does physical therapy, occupational therapy and speech twice a week. He starts preschool tomorrow. The school has got a nurse to be with him for the times he's at school. So i feel better about that. He's also the oldest child with an apnea monitor. I don't look at what Isaac doesn't have, or what he cant do. I look at him for what he can do and what he does have! they tell us to cherish every moment with him and to make wonderful memories with him and his sissy. That's what I do. So isaac has had a fight to live. And he's still fighting. Never give up.

Hi my daughter was diagnosed with hplh at 22 weeks gestation and then trisomy 18 at 26 weeks gestation. She also has four other major heart defects. Due to her conditions we were not offered surgery and advised to consider termination. I refused and carried her to term (we were told she would possibly not make it that far and be still born) Our princess came 15 days overdue and with perfect colour. no jesus was needed. the first few hours were crazy. we were floating on a high so proud of her strength and determination to meet us. As i sit here and write this my little princess is home with us and she is an astounding 39 days old today! Her outcome will not change but may give hope to others who chose not to terminate just for the chance of getting to know their little angels. We just take each second as they come and be thankful for the ones we have already been given. Sharon

My daughter Meleya is going on four months old with Hypoplastic Left Heart Syndrome. She also has Heterotaxy Syndrome. She is doing great! Hearing some of these stories gives me great hope! You would never know there was even anything wrong with her by looking at her. Thanks to St. Louis Childrens Hospital. Dr. Gandhi is the best. I could never thank him more for the life of my baby.

I want to say a big thank you to the lady that wrote to tell about her being born 30 years ago with HLHS and surviving the surgeries. My grandson is 26 months old and he was born with HLHS. He has had the first two surgeries and scheduled to have the third next month. We have been so worried but reading about her experience has truly given us hope and a shinning light at the end of the tunnel. *Thank you* for sharing your experience with us all.

My nephew-to-be has been diagnosed with this HLHS. They say he is fine while still in the womb but will have to undergo surgery as soon as he is born. It has been really helpful to read all of your stories. I pray for him and each of you. I serve a God that can do all things. God bless you all.

To all that don't have hope for children born with HLHS here's my story. I am 30 years old and have been living with HLHS since birth. I can't say life has been perfect and I have not had problems. Today I still work a full time job, have a college degree, own a home, and I am married. There is always hope!

My nephew is 10 days old and is currently recovering from the Norwood operation. He is having some swelling in his head. I was wondering if any of the other children who have had this operation had this difficulty while recovering? If so, were there any long term effects from this? Thank you. It is wonderful to hear stories of people who have lived through the heartache and stress of this series of operations.

My granddaughter Emily is now 5 1/2 years old. She was diagnosed in utero with HLHS. Aggressive early surgeries saved her life. She has gone through the entire series of three procedures and has thrived, although remaining on significant medications. She also has asplenia (no spleen) and suffered a left-side stroke at age 7 days.

She receives plenty of TLC and long naps in the afternoons with her nanny and little sister. A recent scan has caused "concern" among her doctors (as well as her parents and grandparents), so she must undergo another heart cath within the next few days.

Emily has brought boundless joy to our lives, and we pray daily for many more years of her vitality and determination. She is our hero. We love seeing her defy the odds and blaze new trails for those children who will follow her along this painful path. We are eternally grateful to a merciful God and his servants, the committed and determined pediatric cardiac staff of Medical City Dallas, for bringing our Emily back to us time after time. May it ever be so.

My daughter is now 7 weeks old. We found out she has HLHS when she was 3 weeks old. She spent 3 weeks in Childrens Hospital getting the 1st stage of the surgery. And has been home now for 5 days. She's doing amazing. I am so glad I found this site, reading everyone's comments..their kid is 14 years old, 17 years old. it makes me feel so secure that my Tory will have a long healthy life! Thank you!

hi im leanne. I have a little boy called jordan with hlhs and he is six yrs old now and waiting for his third stage surgery. I got a letter this morning that he will be going in to Birmingham Childrens Hospital in the next two months for it. My fingers are crossed that all goes well. xxx

At 21 1/2 weeks I was sent to a perinatologist becouse my baby had an "abnormal heartbeat". After seeing 2 ultrasound techs, 3 doctors, and 1 pediatric cardiologist all in one visit, I recieved very bad news. My baby was diagnosed with HLHS, aortic stenosis, mitral stenosis, and a large mass on his right lung that was putting pressure on the only good part of his heart. The cardiologist told us this was one of the worst cases he's ever seen and didn't now if he would even make it through the whole pregnancy. Our options were three: compassionate care(as far as the pregnancy would go),termination, or attempt the surgeries. These options were given to us on a Thurs. and we were told we had to decide by Mon. We questioned the Dr. as much as possible about the surgery and was told it was only possible if all other organs were healthy, which our case the baby's right lung had a large unknown mass. Having two other small children we decided to terminate. We did not want them to go through life knowing they had a baby brother that died. This was the hardest decision I have ever had to make and pray everyday that it was the right one. I hope some day I'll feel at peace with the decision we made.

My precious son David is 4 and has HLHS. He is such an amazing boy, full of life and energy and imagination. He has a special "something" about him that just draws people in-you can't help but to love him! He had his Fontan last year, 2008, and will be having his follow up cath next month. He is such a boy's boy, loves anything sports, car/truck, or dinosaur! I thank God everyday for my sweet baby. He is worth every second of worry we have had.

My son, Michael, has HLHS. He is now 6 and is doing absolutely awesome! He was diagnosed when I was 20 weeks pregnant. We were told that the *best* option is the 3 step surgery, that it is less risky than the Transplant.

Michael was flown via Boston MedFlight to Children's Hospital in Boston at 3 days old. Had his first surgery at 7 days old, and was released and sent home at 3 weeks old! He did great at home, other than a bout with Acid Reflux. Michael had his second surgery at 5 months old, and was released from the hospital 4 days later!! His third surgery came when he was 18 months old, and again, we were home within a week!

Michael is now a healthy, happy 6 year old boy. He is on daily medication, we see the cardiologist annually, and have received excellent reports so far.

All I have to say is for the person that posted that we should be thanking the doctors and not *God*, you are wrong for saying that. Without God these doctors would not have the ability to help our children survive! It is through the doctors that God is seeing to it that our babies are taken care of! Maybe you should read a bible!!

My daughter was born in September 2004 and has had a cath at a few days old, a BT Shunt at 10 days old, another cath at 6 months old, open heart surgery for the Glenn procedure at 7 months old and a cath at 4 1/2 years old and is now waiting for the Fontan.

I have been trying to research the life expectancy for Fontan patients which is hard to do because the first one was done around the 1960's which only gives us 40 years so far. We have faith that she will live a long healthy life, but I want more information. If anyone has anything I can use, please comment.

Thank you and may God bless you all!

My grandson, Nathan, will be four in July. He was born with hypoplastic left heart syndrome. We did not know he had this condition until he was three days old and rushed to Phoenix Children's Hospital. When he was ten days old, they performed the first operation. When he was five months old, he had his second operation. He developed an infection in his sternum. He had to be taken back to surgery to debride the area and required antibiotics.

When he was just over two years old, the third surgery was performed and again, he developed an infection in his sternum. It took him longer to recover from this surgery. He went home after six weeks in the hospital and after full recovery, looked and acted like any other two year old until March of 2009 when he was three and a half.

He developed a cold, gained weight from fluid collecting in his abdomen and his energy level was reduced. A blood test revealed his Albumin was low, so he was hospitalized overnight for an infusion of Albumin and more tests. The results came back that he has protein losing enteropathy, which is a very serious conditon.

He was admitted to the hospital a week after Mother's Day for a cardiac cath. This showed his heart is not functioning properly, which increased the pressures in his heart, which then caused the PLE. He stayed in the hospital for five days getting more infusions of Albumin and his doctor worked on changing his medications to make his heart function better.

This week he had a blood test to check his Albumin level and it has gone up, which is a good sign that the medications seem to be working. His doctor said we won't know for a few months if this complication has resolved.

We were told if this latest complication does not work, the only option left is to go to Palo Alto, CA for a heart transplant.

Nathan was never left alone in the hospital for more than five minutes and I feel this has helped with his recovery each time. I have watched him since he was born in the hospital and at home when his Mom and Dad work. He is a very happy little boy and is now back to full energy. He is very bright and has an amazing memory. He always bounces back from any complication. If his parents had not opted for the surgeries, we would have missed his smiles that warm your heart and all the fun we have had together. He is our miracle.

I know God will continue to watch over Nathan and see him through anything he faces. After all, Nathan means Gift of God.

To assist the mothers in there very tough decision and add to the many messages of hope. I just wanted to share with you my miracle.

My son was born in 1995. He is a heart transplant recipient. He has his labs checked every three months and has an annual cath. Other than this, he is completely healthy. He is on his school's basketball and football team. Now the comment about daydreaming did ring true for me. He loves to daydream; and the teachers do have to que him. However, he is on the honor roll this quarter so I can't complain.

My son, Lelan, turned 3 years old on Feb 22. He was diagnosed with HLHS, right leaky valve and a narrowed aorta. He had the 3 open heart surgeries for the HLHS and they tried to repair the leaky valve. All 3 surgeries and they thought that his aorta would open up as Lelan grew. We found out last week that his aorta has become more narrowed so we are currently waiting for the phone call to bring him back to the hospital to have a balloon and stint put in. We have noticed that he is becoming more tired but other than that, he is usually the most energetic 3 year old I have ever seen and you can't tell anything is wrong with him unless you see me give him his meds or if you see his chest. He is my miracle baby.

My son was diagnosed with HLHS at 20 weeks gesture. We decided to let him go, not to put him through all the pain and horrors of surgeries and the not full life. So the pregnancy was terminated. I have to add, that the 3-stage procedure is not performed in my country, we would have had no help at home by the doctors, only abroad.

We miss him terribly, but we know that we did the right thing for him.

I have twin sons. One of them HLHS. Was not diagnosed until he failed to thrive in NICU/PICU. Artireial ligation, Bi-Directional Glenn, Fenestrated Fontan, pacemaker and various other proceedures. He is 14 years old now. 2ft shorter than his twin. He loves video games, action movies, nice clothes and girls. This universe is such a roll of the dice!? You live as well as you can with what you are dealt. My heart breaks for you and me too. I hope for peace and comfort for us all. God be merciful.

My son was born with Hypoplastic left heart, trans of the great arteries, asd and vsd. He underwent the three step surgery process at five days old, 7 months, and finaly the fontan in Oct of 08 at four years old. In june he went into heart failure and has been waiting for a new heart since june. Never once during any of his surgeries did the conversation of a possible heart transplant in the future might be needed. On Nov 4th a day before his fifth birthday they rushed him into surgery to install the Berlin heart. The Berlin heart isn't even FDA approved. We have two children with heart defects and there is no good in the picture when it comes to what these doctors can do. He has been in the PICU 151 days and still counting.

Thanks for the article. Our daughter Bethan has HLHS and is 4 years old. She has had the first 2 operations and is now waiting to go into Birmingham Childrens Hospital (UK) for the last surgery. I guess the procedure buys all of us time. We'll never know where technology and medical breakthroughs will be in 20 years time, that might replace heart transplants - just look how far we've come. It was only a few weeks ago I read that they were talking about growing organs in the lab!

im 22 weeks pregnant my son has been diagnosed with hypoplastic syndrome the doctors gave me the option either to terminate my pregnancy before 24 weeks or 2 continue and let my son have the 3 surgeries im so lost n confused with what to do i have no one 2 turn to and they only gave me the weekend to give them and answer ((today is friday)). its so hard when you feel your first child moving aroundin you, you almost feel guilty thinking about terminating him, should i not terminate my pregnancy what are the chances of him living a regular length life, my income is not well enough to have a heart transplant ((if needed)) i ask my self why me why anyone

My daughter Kayla is now 6 years old and had two surgeries by the time she was 7 months. On Dec 10,2008 a Cath procedure was done to determine the timing for her last surgery Fontan. It looks like she will be having her surgery sometime in February 2009. We have our trust in God as our Healer he will heal our daughter and everyone else with HLHS. Having Faith in God has kept us from having a total nervous break down. Kayla was born a strong baby and with God's favor on her side.

My name is Brad. My wife is pregnant with our second child due 02/22 but we will be having 02/13 via c-section. Our little Jake has been diagnosed with HLHS and will have surgery right after birth. I am so so scared but have all the faith in the world that the doctors have all the abilities to do his job and to make our baby ok and to live a normal life. It will be a long journey but if other people make it through the journey, then we can make it especially with God's help. God bless everyone and Happy Holidays.

My son is just now 4 months old and was born with HLHS. At birth we didn't know he had anything wrong. Had him home for a week and a half and at his 4th pediatrician visit after numerous complaints on my part that something wasn't right with him and them telling me everything was okay he crashed in the drs office. I have no one other then GOD to thank that our baby boy is still here with us today. Thanks to the amazing drs and the surgeon Dr. Quinn at Maine Medical center i have a beautiful baby boy to hold in my arms everyday and night. He has has his first Norwood and will have the Glenn mid-January of 2009. He is doing very good. He suffered a small left side stroke post op but to this day his head scan is normal and there are no signs of the stroke. He acts fine and his motor skills are good. If you didn't know he had HLHS you would think he was a perfectly healthy baby. So yes, i Thank GOD everyday for this miracle baby he has blessed our family with. I have high hopes for him and know that he will live a long eventful life as any normal child would. He may get tired quicker, but who cares! At least he's in this world with us! God Bless you all that are dealing with HLHS.

How can you say that the Fontan only buys time when the survivors are still only in their 20's?

Without GOD and His infinite wisdom there would be no doctors to thank. We are all very grateful to the doctors that helped to save our children but I know that there is a greater power behind man that gives them the mind to know how to do all these extraordinary things. So I say again THANK GOD!!

Thank the doctors who came up with the procedures to save your children. This is right.

What you do is thank an unobserved thing with no consensus definition (you call it God) and ignore the people who were observed saving your friends and family. This is inaccurate. I thank the doctors, very much.

My son was born with HLHS and he is 8 months and has had his first two surgeries. He is truly a God sent baby and a joy in our lives. He is doing great and as active as ever. Just hearing the other responses makes me glad that you believe in hope and that no one other that God has blessed us with children that will continue to be a light in this world.

My son is 8 years old with a single ventricle heart (HRHS) and also underwent the Norwood procedure. He looks normal and acts normal, Plays and runs even though he does get tired more quickly compare to my nephews of similar age. My current concern is his attention span... "day dreams" a lot and is affecting him in school. I wonder if other children of this condition face the same problem.

My brother has HLHS. He is 15 years old and he is a miracle. He has even practice go-karts. Thank God for enabling the medicine field to get updated and expanded. Bless all of you and your family HLHS members. There is hope. Trust in God.

My daughter has HLHS. She is almost 14 months and has had her two first surgeries. She is doing very well, is smart and beautiful. When she was first born the doctors pretty much didn't give us alot of hope. I was actually afraid to breastfeed because I didn't know what I would do if we lost her. We were asked several times if we wanted to opt for compassionate care instead of surgery. Thank God we chose to fight for our daughter instead of giving up. She has been such a total joy in our lives! We are so blessed that medicine has come far enough to allow our daughter to have a life and a future. I don't know what we would ever do without her, and I hope to never find out. Here's to cloning a new fully functional heart in the near future!

I hope all parents with children who have HLHS read this. My name is Garrett and I was born with HLHS. I am now 17 and have had all the surgeries I need. I had a total of three surgeries all before I was three. So I guess all I can say to any parents who are having to deal with this is that there is hope for their child.

My nephew, Ryan, was born in 1997 with hypoplastic left heart syndrome. His surgeries were performed at C.S. Motts Children's Hospital by Dr. Bove (one of God's special gifts to the medical field). Ryan is on no other medicine besides coumadin (had a heart valve replacement a few years ago). He is scheduled for another valve replacement in March. Ryan is super intelligent and a great joy to be around. He is our miracle child and unless you know his history, you would never know he was born with this defect. The surgeries are the best answer to this problem.

My granddaughter is hypoplastic and is now 4 years old and doing well. She has had the 3 surgeries. I was looking for typical life expectancy without a heart transplant. Also, when and what makes a transplant a viable thing to do.

Thank you

My son Has HLHS, he is 7. He underwent the stage 3 on Valentine's Day 2005. He is doing great. Dr. George Alfieris Saved him.

My daughter has Hypoplastic Left Heart Syndrome. I am so grateful to the person who invented the Norwood 3 stage surgical option for this illness. My daughter is 2 years old. Still alive and doing well. We are just waiting for the stage 3 to be done.