oldest HLHS known

Kimberly - posted on 10/15/2009 ( 58 moms have responded )

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i just cant help but wonder how old my son will be.... I would really love to know how old he will make it to be

MOST HELPFUL POSTS

Chris - posted on 11/22/2013

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Hi, I have HLHS, I was born in 1992 and I'm a 21 year old man. My girlfriend and I wondered what the chances are my children will get HLHS too.

Melony - posted on 05/25/2013

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I have Hlhs and at age 6 I had a stroke , I am 41 years young, I had the fontane when I was 8 after having 2 other surgerys when i was a baby . My stroke left me with let side weakness, I would love to hear from others who are older then me .....Thans , Mel
God Bless
feel freeee to friend me on my facebook

Kaniaj - posted on 06/02/2012

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I am a 26 year old hlhs survivor..had two surgeries in 86&87 it was only done in 2 stages back then docs say that's how they know I'm an OG lol..I haven't been on meds since I was 3 and I've never had a pacemaker and i know of two girls that are about 2 yrs older than me and one boy who is a year younger we are sum of the oldest living.. I am the first hlhs woman to have had a baby without c section.I was told my child had an 89% chance of having what I hve..but He is 100% healthy& he'll be 3yrs old on June 5th.. My advice to all hlhs parents and survivors keep Faith in God bc with Him All things are Possible ♥..heart hugs to u All!

Melony - posted on 03/25/2014

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My name is melony Reaster , and yes I have HLHS .. I have a page but I use the last name Sparrow .. I do have HLHS and I did have all 3 surgeries.. I am not making this up and would never do this but for some reason there are some people I have come across that call me a liar ..I had all 3 surgeries at children's in Cincinnati I had the fontan when I was 8 and by the grace of God I am still doing good and my fontan is so working

58 Comments

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Viki - posted on 08/19/2017

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1st Fontan was performed in 1968 wildly used in 1971. The Norwood came later. I realize you think because it's the first surgery it must have been performed first. However it is it simply was not. Early days only had 2 surgeries.

Badazzcowgirl18 - posted on 06/08/2017

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My daughter has hypoplastic left heart double outlet right ventricle pulmonary stenosis and reversed ductal flow...she is now 13. She's now learning about symptoms to watch for etc. She had her birth control implant today because of risk of her ever getting pregnant. It's an emotional Rollercoaster for sure. She will need a heart transplant eventually. We have very close monitoring of her liver and kidneys a big downer of the fontan procedure . Right now we have alot of problems with low blood pressures and low heart rates when just last year it was the complete opposite. One thing I've noticed is her personal emotional changes the older she gets and the more she's involved. Hardest thing a parent ever has to go through is a doctor telling your 13 year old it's important to report any changes from here on out so if something happens they are able to treat it in time. Think what breaks my heart the most is I don't know if she knows after living this way her whole life what's different and what's not and I can't feel anything. Every day is a struggle but the memories made is amazing and I'm great full for. Cherish each moment with these babies.

Mstngsly3 - posted on 04/28/2017

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Hi all..I am grandmother raising my grandson who was born with HLHS and he has multiple complications. At age 3 he had his Fontan - yet unfortunately they decided that he needed a pacemaker implanted at that time as well. He struggles every day....

I am now worried about the news about the new infection which may have been transmitted during any one of his multiple surgeries...anyone else have info or know anyone that has been diagnosed yet??

Theodorazangoulou - posted on 04/13/2017

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The first fontan is 1971 melody sparrow she tell you have hlhs and now 45 ?!!

Melony - posted on 01/30/2017

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I have had Tb shunt and fontan A stroke at age 6. My fontan surgery was a age 8. . I have one chamber and one fourth. I am about to Turn 45 years old next week! !!!!!!!!! . Prayers for all! !!

Eva - posted on 06/13/2016

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Hi, my stepson has hlhs and had the Fontan procedure and he too has problems in school, as well as emotional and behavioral issues. We are currently waiting on a referral from hos Cardiologist at childrens for a neuropsych eval. Apparently it is now known that children with this conditiob, who have had the fontan routinely have learning, emotional, and behavioral difficulties.

Melony - posted on 01/14/2016

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I am 43 ,44 next month, I do have Hlhs. But did not have a Norwood. I really don't understand why some think I would make this up. I've had shunts and then at the age of 6 I suffered a brain stem stroke during a cardiac catherization then when I turn 8 and was stronger I under went a Fontan Then at age 43 my doctor's talked about doing a Fontan revision but after 3 cardiac catherizations they said my original Fontan was still working and I do not need one at this time. I am doing great and attend Cardiac rehab at Anderson Mercy Health plex.

Melony - posted on 10/14/2015

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I am 43 years old. Had the fontan at age 8. No. Norwood. . Had a major stroke at ahe 6. We are living longer these days. My doctor is Grushan Veltmen at Cincinnati Children's hospital. I know of. A Hlhs patient in my clinic the is 60 , My hope is noy to brag but let you know their is alot of hope out there, our lives are blessed by God.

Mary Elizabeth - posted on 09/29/2015

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If You hear back any thing on this subject please yet me know. I have a 7 year old granddaughter who is having trouble in school. and they will not listen to me about heart problem being the reason

Badazzcowgirl18 - posted on 07/05/2015

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Thanks alot for sharing your stories. My daughter Destiny is 11 and has hypoplastic left heart double outlet right ventricle reversed ductal flow mitral atresia asthma and Scoliosis. She's has completed the Norwood procedure and several minor things through heart caths. Her first operation was done at 1 day second 6 months third at age 3. Brenner's Children's Hospital have been the best. It's tough going through these last 11 years. With my daughters case and it being so complex she is my true hero. For mothers of children just now facing the long road knowledge is very important. Suck in all the information. I cherish each day I have with my little miracle. Thanks to all who have posted their stories to help raise awareness.

Raegan - posted on 03/29/2015

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My son has HLHS and is 20 years old. He had his norwood at 7 days, his glenn at 6month and his fontane at 1 1/2 years. He did have eating issues and learning delays. He flew clear without any additional heart issues until he turned 18. Kinda like a light switch flipping, things started happening. The arrhythmias started because of the scar tissue in the atrium. He has been cardioverted twice and had an ablation. He went into cardiac arrest in Nov 2013 and now has a sub q defibrillator. He is still happy and full of life. I thank God everyday for all that he has done for my son to still be here. Every journey is different, but I know all of the worries and fears are same. Enjoy everyday.

Karolyn - posted on 02/05/2015

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My son had 1st Norwood procedure in 06/1988, there are 3 surgeries done with the Fontan. My son is also a miracle, thank you Jesus!!

Afooter - posted on 01/13/2015

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France's Fontan did the very first Fontan in 1968
Francis Fontan performed the Fontan operation first in 1968. The Fontan operation is a heart operation used to treat complex congenital heart defects (birth defects of the heart) like tricuspid atresia, hypoplastic left heart syndrome (HLHS), pulmonary atresia and single ventricle.

Upali - posted on 11/13/2014

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Hi pratibha. Where in bangalore did you have your surgery? Which hospital? which doctor?

Jackie - posted on 10/13/2014

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My son was born with HLHS and is 34 years old. We've been through some tough times but he keeps coming back even more determined. When he had the Fontan at the age of 7, we were told that he wouldn't live past his early 20's. My miracle baby is now a happy 34 yr old Paramedic who continues to beat everything that's been thrown his way. Never, ever give up hope!

Theresahoyle2009 - posted on 10/05/2014

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the 1st Norwood procedure was preformed in 1980. this would make the oldest living person who has had this procedure 34 yrs old. now there is someone claiming to be 42 and having the 1st norwood. and also going by 3 dif profile's on facebook. she block's PPL when they question her. and she steals info off post claiming she has this same thing. the next day ! she has been kicked out of many HLHS groups and its hard to tell if it is her or not because of the dif name profiles. I JUST WANT TO WARN PPL , NEW MOMS AND ALL ELSE.ANYONE WHO SAYS THEY ARE 42 AND HAD THE 1ST NORWOOD IS A FAKE. THEY ARE LOOKING FOR FRIENDS AND SYMPATHY !! AND BE VERY CAREFUL WHO YOU TRUST.

Sk - posted on 09/01/2014

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Hi Melony,
you are 41 years old? that gives me soo much happiness to know. my daughter has hlhs and has been given an age limit of 15.. please please let me know what were the problems you had? I'm so worried for her..

Kyle - posted on 08/14/2014

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I just stumbled upon this website because I was doing some research to encourage a family who just contacted me about their son who was born last month as single ventricle patient. I have been told I am the oldest living single ventricle patient that is still alive. I will be 45 next month. I had a precursor to the Fontan at 5 months old, in Feb of 1970 I had several other issues so there was no name to the procedure they did, they literally were making it up as they went. Once they opened me they realized that I only had 1 1/2 valves so it was clearly not something they had ever seen. (especially in 1970) This procedure was done at Shands at UF.
I later had a modified Fontan at 11 years old performed by Jim Alexander, again at Shands which actually did not go as they planned in that they could not get me off the heart lung machine, so Dr Alexander quickly performed a Glenn in an effort to get me off the table. The results of this is actually what lead to others having the fontan followed by a glenn although at different times as that procedure was actually 26 hours. Margareta I saw where you posted about the young woman with HLHS in her 20s having a baby, I know there is a young women in Atlanta that did this, (I only know because we have the same cardiologist at Emory and it STRESSED her (my cardiologist) out, to the point that she was also in the delivery room.)
To the parents who are out there who that are looking for answers I can tell you, your kids can have a fairly normal life. They might not run a marathon and they're probably not going to be the star athlete but they can have a good life. My best advice for parents is to not stress at the little stuff, stress, especially unnecessary stress, is one of the biggest factors in how your child will progress. The last thing, and I know this may be unpopular today, but I can tell you for a FACT that my faith in the Lord (Jesus) is the only reason I am alive. I will be happy to answer any questions parents may have you can email me anytime at kylehosner@yahoo.com and I will do my best to get back to you as soon as possible. I hope this helps.
God Bless
Kyle

Shelbe - posted on 07/23/2014

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My son was born with hlhs in 2013. He don't do his surgery has yet but he is doing very well I am praying for my son.

JJ - posted on 07/18/2014

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I have read several posts calling this Melony Sparrow a liar. I don't know Melony, but I know the history of heart surgery a bit. The Fontan was first performed by Fontan and Baudet in 1971. The modified version of the Fontan performed by Norwood took place in 1989, also known as the hemi-Fontan. One should do a little research before calling someone a liar. I am not defending Melony on whether or not she had the surgery, but the dates are possible.

Details on the history of the Fontan can be found here:
http://ispub.com/IJTCVS/12/1/13255

Carrie - posted on 05/23/2014

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My sister was missing the entire left ventricle as well. She was seen and treated at Cincinnati Children's Hospital and back then they had never seen anything like her (June of 1976). They did everything they could back then to keep her alive but there wasn't the technology that we have now. She died in Cincinnati Children's Hospital on March 11, 1977. It is so wonderful to hear about others living and thriving with this devastating condition. My parents made the difficult decision to allow them to study her little body in the hopes of being able to someday help others. I pray that because of her others are now living.

Brittney - posted on 05/22/2014

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My son was diagnosed when I was four months pregnant, he is now 12 and is a walking miracle. On the twelfth of June we found in for a pacemaker. I live in nevada and this is the first time I've seen anything about anyone else. I would love to help

Ardelis - posted on 03/21/2014

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Everyone is different but with all the advances out there now a days the life expectancy of those with HLHS is increasing. I was born with HLHS and TGA. I am now 31 yrs old...will be 32 in Nov. I had my first surgery in Chicago and the other two in New York (Montefiore Hospital). So far no other complications. Contact me at ac.altayr@yahoo.com. :)

KAREN - posted on 03/15/2014

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MY SON WAS BORN 7/1991..HAD 3 STAGED NORWOOD PROCEDURE AT CHOP//AN ARDUOUS JOURNEY BUT WORTH IT..HES HEALTHY AND THRIVING..UNDERSTANDS HLHS BUT NEVER TALKS ABOUT IT...GOOD LUCK

Patricia - posted on 03/14/2014

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Melanie sparrow is still lying about her HLHS she's a vile and despicable liar

Marika - posted on 01/18/2014

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Hi Pratibha

I am 22 weeks pregnant and my baby is diagnosed with HLHS. I am looking for placed in India to do the Norwood procedure. I read you did you surgery in Bangalore and was wondering if you could share the name of the doctor and hospital with me.

Thanks

Marika

Sarah - posted on 10/21/2013

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Melanie sparrow is a fake , a scammer and in my mind sick in the head to pretend to have hlhs .Its an insult to our children and all they're going through. My son is 1 and he does have hlhs and im very angry to see this troll on here too

Shayla - posted on 09/13/2013

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Did you have any problems with school ?I heard my son may have some learning probes because of being hlhs

Nancy - posted on 09/12/2013

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Melanie,
The first fontan was performed in 1971. And yes, my sister-in-law had her fontan performed at St Luke's hospital in downtown Boise by two cardiologists. They are both still alive. We have all of her medical records. Today, these surgeries would obviously be performed at pediatric hospitals by specialists, but back then it was a life or death situation for her, so that is why is happened in Boise. So if you don't think I know what I'm talking about, I do. We've been living with this for years.

Jill - posted on 08/26/2013

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My son is 25 years old. He was born with single R ventricle mitral atresia transposed arteries and PDA HLHS. He had a pulmonary band at 3 weeks old and then a fontan at age 2. He has had a full but difficult life and I wish I could have known more about what might happen to him when I made decisions at he beginning of his life.

Angela - posted on 06/30/2013

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MY SON WAS BORN WITH HLHS IN JULY 1994. HE IS ALMOST 19 NOW. :o) A LONG HARD HAUL.... BUT WORTH EVERY STEP ♥

Pratibha - posted on 06/12/2013

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Hi. I myself had the Fontan procedure done followed by Glenn when I was 16. Now I am 25 and living an Absolutely good life. I got operated in Bangalore, India.

I feel hope and desire are the two major things which will kepp a single ventricle person alive.

I have no issues in all these nine years and the yearly review also reveals no complications. I had the PPI for pacemaker but stioll doing well through.

Gabrielle - posted on 06/04/2013

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I am 27 HLHS will be 28 in Sept. I am true HLHS I am missing the ENTIRE left side. I only had TWO working chambers. In the 90's they changed Hypoplastic Left Ventricle and Hypoplastic Left Heart into one. Hypoplastic Left Ventricle meant you had an aorta just missing ventricle, they did this to make it easier for hospital personnel. Personally just makes it worse if you are traditional HLHS because they argue that you have an aorta and you don't.. The fontan is stage 3 and it was changed to stage 3 in the 90's but in the 80's we had Norwood and Modified Hemi Fontan. It was different then what Fontan currently is. In the 80's I had stage one Norwood and stage 2 Modern Hemi Fontan. So oldest HLHSer depends do you mean traditional HLHS with 2 chambers or 3 chambers that work?

Ashley - posted on 06/01/2013

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Melony Sparrow, the third surgery you speak of was only invented in the late 80's. the oldest survivors with HLHS are known to be under 30. Where did you have yours done?
And Nancy Elizondo, as I just said, the 3rd surgery was only invented in the late 80's. Also, even if you sister-in-law did somehow have the surgery before it was invented, it would not have been done in Boise Idaho. Even today if she was in Idaho she would be transferred to a pediatric hospital that has the proper cardiologist and surgeons needed for her to have those surgeries.

Nancy - posted on 01/01/2013

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My sister-in-law, Alex, was born with a single left ventricle in 1970 (missing right side). She had the fontan procedure back in 1982 in Boise, Idaho and. . .she is still alive. She is now 42 years-old. She has lived a relatively normal life--she even had 2 children who are now grown teenage boys. This is probably hard to believe, but its all true. She moved to Idaho Falls from the Salem, OR area 5-years ago and is a now patient at Univ of Utah's Children's Cardiology unit. She goes down 2-3 times a year for checkups and at least 4-6 cardiologists are always there to get a look at her. As she approaches her 43rd birthday in March, she is now showing signs of degradation and they are considering her options. The newer fontan procedures are better than the older ones, so you might be having your little ones go to college, get married, have families, etc. Word of advice--be sure to get regular liver checkups as liver degradation is a long-term side effect of fontans and live at sea level, if possible. The high altitude of Idaho Falls has definitely had a negative effect on her. God bless all of you and your little ones!!!

Brenda - posted on 09/30/2012

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My son Nick is 27, born in 1985, and was a patient of Dr Norwood and Dr Pigott at CHOP. Always wonder how many other HPLH are his age or older.

Karen - posted on 09/06/2012

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Her name is Julie Pritchett Moorefield. She is now 31 and lives in North Idaho.

Kaniaj - posted on 06/02/2012

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Oan had my surgeries done by Dr Norwood himself @CHILDRENS HOSPITAL OF PHILADELPHIA-CHOP8)

Westfall - posted on 02/22/2011

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When our son was born in 1994 with HLHS we asked doctors up north at C.H.O.P. what the oldest known survivors were at that point and they said they had two 15 year olds. That would make them around 31 now. Now that my son is 16 he is curious to track them down.

Kylee - posted on 01/18/2010

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i wonder the same things sometimes but as i am sure the doctors have told u most of the surviving hypoplasts are 25- 30, its diffrent for every child my son is almost two and there are definitely a lot of uncertainties. my son has has had both his norwood and his glynn and he is doing really good now walking and talking but u never will know what the future will bring hlhs is defientely a guessing game and i definitely know how u feel

Stephanie - posted on 01/07/2010

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My daughter was 3 months old when they diagnosed her HLHS. Her first surgery was when she was 4 days old to repair a coarctation of her aorta. She was also diagnosed with needing an av canal repair. The second one never happened because we found out she was HLHS. She was listed in July of 2004 and had her transplant Sept. of 2004. She is now a beautiful 5 year old that loves school. So far so good. She takes 2 medications every day and knows why. I know that the choices are scary. You just have to see what is best for you and your son. We thought about quality of life not quantity when we made our decision. I feel that we made the right choice for us. I wish you all the luck.

P.S. That is her in the photo last year in Fl. for her Make-A-Wish trip. She was 4yrs old.

Lori - posted on 01/02/2010

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My son was born with single ventricle in 1993. He also had transposition of great vessels, mitral valve atresia, and lower lobe of left lung blood supply was provided by collateral circulation that developed from aorta. Docs that did his angiogram at 7 days old said his circulatory system looked like the San Francisco freeway system, lol!

He went through two balloon septostomies by the time he was 9 months, to keep the atrial septal defect open. Had open heart surgery at 10 months - removed 90% of atrial-septal wall... He also had g-tube (feeding tube surgically implanted in stomach) at same time... He also had other health issues. I made decision to take him off meds due to quality of life when he was 14... He was the joy of my life and my "sunshine boy".. All you can do is pray that each day will be good, and realize that each minute is special.

Margareta - posted on 11/28/2009

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Hi the oldest person that I have heard of is an American vet, he is around 30-31 yrs old: http://www.wedu.org/Content/VideoPop/SH_... - go to around 19.45 mins in and you will get to his story.

I have also heard of an american woman in her 20's who has not long had a baby - The woman is HLHS.

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