Anyone with a chilld with HLHS

Karla - posted on 03/30/2009 ( 25 moms have responded )

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Hi. My name is Karla. I'm 19 years old and my 5 month old daughter has HLHS. Sasha had her NOrwood at 1 week old and will soon have her Glenn this summer. We spent17 weeks in the hospital after the norwood and we were put through alot. It was a very difficult recovery period. She went into cardiac arrest twice and had to be intubated and reintubated several different times. Despite everything she went through, Sasha is now doing AMAZING!! when people look at her, no one can even tell that she has a heart defect, let alone, one so severe. She is a joy to have around.

As we near this second heart surgery, I am just seeking out support from other heart familes. I would like to get to know as many families as possible. Thanks, Karla

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Sarah - posted on 01/12/2013

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My son was born 01/27/2012 with HLHS. He had his first surgery at 5 days old. We found out when I was 13 weeks pregnant. His first stay in the hospital was a gruesome 4 1/2 months. We held him for the very first time when he was 3 1/2 months old. He came home for a month and ended up back in the hospital for bowel obstruction and that left us in the hospital for a month. He got out, went home and had his 2nd surgery (glynn) and that time we were only in there for 5 weeks. Needless to say he's been in the hospital more than he's been out. BUT he's finally on the right track, we aren't due for the 3rd surgery until he's 2-3 yrs old. Anyone who is looking at this blog for advice.... My advice to you is prepare yourself as much as possible, prepare yourself for a HUGE emotional roller coaster. It is hard at times but when things finally slow down you will look back and see that it was all worth the patience and most of all the wait. ((Heart Hugs)) ♥

Valerie - posted on 06/10/2014

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I'm Valerie. My child is 8 years old. He was born with HPLH. I can be reached at mrsplus3@juno.com if you need someone to talk to. I understand the process & sometimes to hear it from other Mom's who've gone through it..... It's encouraging.

Deborah - posted on 10/07/2009

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Hello Karla, My name is deborah and my son also has HLHS. His name is Carsyn and is now 6 years old and is doing great. I know this may sound funny...take lots of pictures. My son loves to show people his pictures and scars. It is a part of them. I hope things go well with the upcoming surgery. -Deborah

Charlott/Annie - posted on 09/28/2009

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My younger son has HLHS. We knew about it with the ultrasound so everything was ready when I was induced. He had to be transferred to another hospital to have the surgery done. He had his Norwood at 3 days and was in the hospital for 5 weeks. I didn't even get to hold him till he was 3 weeks old. He had his Glen in March went home a couple days afterwards and after 4 days of being home was back with a fever for another 2 weeks. Everyone tells me how most HLHS babies are really cranky but he is the happiest baby I've ever seen and no one can ever tell anything is wrong with him and that was even before he has his second surgery.

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Hi i am a mother to my 8 month old son with HLHS he is currently in PICU just had his Glenn and still needs alot of time to recover. The 1st stage of Norwood took 3-4 months in Hospital for my son to recover. We then got sent to another hospital which took another month we finally got home in september and now back in hospital. He had his feeding tube no solid food yet he was just on milk. Through his NG tube he had medications for his heart and fluid output. He had a Sub Cut Cannula placed on his leg needing to change that once a week it was for his blood clotting injections which had to be given twice a day.I and my partner had a very rough time through this situation. Would like to say my sympathy is with all the mums. Good luck and always believe there is God who will surely protect and cure your little one..

Andreanna - posted on 02/15/2014

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My name is andreanna (Nanna) I'm almost 30 weeks pregnant. Our baby Parker was diagnosed at 22 weeks with hlhs.. We learned just a few weeks ago that his case was pretty severe on the spectrum. Any advice from any hlhs moms?

Mona - posted on 02/02/2014

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Hi Karla, my son was born on 1/4/12. He was diagnosed with HLHS when I was pregnant with him 5 months. He spent 2 1/2 months in the NICU. He had the Norwood and the Glenn done. He also has a g tube for his feelings. He's doing so great even tho he's been thru a journey. Just be strong and keep your faith. It will get better. Good luck and wish you the best

Ryan - posted on 01/31/2014

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Me and my partner lost our baby to HLHS ... The only bit of advice i can give you is to live each day as though it is your last. It is awful and horrible to have to say goodbye, .... stay strong and make every second count!!

Jodie - posted on 12/07/2013

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Does anyone who has a "Glenn baby" notice they get puffy eyes when they fuss or cry? I notice them sometimes but others he looks great..... Thanks!
He's almost 7 months old and has had his Norwood and his Glenn.

Shayla - posted on 09/13/2013

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My son is four months old and he will be getting his glen done soon , I just turned 20 years old if you wanna talk about being a young mom with a baby who has hlhs feel free to email me :) shaylakatrick93@gmail.com

April - posted on 08/15/2013

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I am actually the grandma of a newborn just diagnosed with HLHS. I was looking for support for my daughter-in-law. I think it's very important to see the positives that come post surgery. This is a difficult life for the child and the family but it is good to hear that many do well and can still have some normalcy in their lives. Thank you all for sharing your stories.

Silmara - posted on 02/03/2013

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hi karla my son was born in sept 2012 with the same heart condition, we spent 4wks and 2 days at hosp/ cant tell he had anything done... When u mention you are near to the second .. i do understand, my son is going for his second this coming friday the 8./ I pray, think positive..(beside the support from friends... I hope thing go well for you.. and me....i'll let u know..... I believe in a thing called love/ I believe in a higher power..my strength...i have to have faith....every time i look into his eyes and see his smile.. became stronger and stronger.. til next time...

Alexa - posted on 11/01/2011

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Karla, Thank you so much for this post. I am almost 3 months pregnant and my baby was diagnosed today with HLHS, I did NOT know what so ever that i was pregnant til 4 days ago. This post is encouraging i hope my baby will do just as amazing as your God Bless

Lisa - posted on 11/17/2010

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my daugther is 5, and she also has HLHS. She has had all 3 Norwood Procedures and is a fire cracker. No body can tell that she has a heart problem if they didn't know her. She is healthy and will go in for a heart cath in March 2011.

Amelia - posted on 10/15/2009

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My oldest son is 4.5 and he has HLHS. His fontan was June 2007 and his fenestration was closed in September 2008. He has been doing well, although he still has physical therapy and special ed preschool.

Lisa - posted on 08/29/2009

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Hi Karla, My name is Lisa I guess you've been trying to IM on my personal email but I wasn't sure who you were. My sons has HLHS. How did you find me?

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There is a web sight for heart families- Hearts of Hope? I am in the suport group. My youngest has HLHS as well as Down Syndrome. If you want to look up on the net- you should be able to read otherp arents stories on line? It was a great help and support to me! Keeping you in prayer, Rose

Amelia - posted on 04/28/2009

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My HLHS son turned 4 this past February. He is doing very well, other than needing g-tube feeds at night. (He just doesn't eat enough to grow.) He had his Fontan in June 2007 and the fenestration was closed in September 2008. I can't say that "you can't tell he has a heart defect", but he certainly loves life and is a joy to all around him. I have a photo journey of his trials on Facebook, but his carepage is DanielBoomker.
http://www.carepages.com

Kayla - posted on 04/19/2009

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Hi! My son is 8 months old and has HLHS as well! He has his Norwood at 4 days and did amazing! He was in the NICU for 7.5 weeks after his surgery, but not for cardiac problems...he had feeding issues. He had his Glenn in February of 09 and did great with it as well. They only problem he had coming out of that was they used a ETT tube that was half a size too big so he developed a condition called Stridor (where they squeal when they breath from their throat swelling) and had to be re-intubated once after he was extubated. He was out in a week following his surgery. He looks perfectly heatlhy, you really cannot tell (when he has clothes on of course =]) that he has a heart defect! He is a happier baby than most healthy babies we go around!! It's amazing what these little ones can go thru! I wish you the best of luck with her next surgery!!

Christina - posted on 04/19/2009

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Wow your story is pretty close to my daughters. She has hlhs as well and is 19 months old. She has had her first and second stage by the age of 6 months. At 2 months old she went into cardiac arrest twice and was on echmo twice for 2 days. She suffers from sever brain injury and seizures. We were also told that it was in her best to stop her care and just let her go be with jesus. We knew in our hearts that she would pull through and she did. Here is more of her story. http://www.godtodayfreenewsletter.org/co...
Id love to talk to you more!

Lori - posted on 04/17/2009

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I have one that will be 5 on the 19th. You can not tell that she has a heart defect. She has had all of her surgrey's.

Kaela - posted on 04/14/2009

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Your story sounds so much like my own! My son Alden, whose now one, was in the hospital for 24 weeks post norwood, with several runs on ECMO and right ventricle failure. At one point doctors told me he was so several brain damaged he that it might not be in his best interest to continue. He's been doing awesome every since discharge and is making rapid gains with his gross and fine motor skills. His neurologist has also changed his tune after seeing what he can do. We just had our Hemi in March and he was only in for a week!!! I was totally shocked! I hope that gives you some measure of comfort that past doesn't necessarily repeat itself Good luck to you and your daughter, and let me know if there is anything I can do for you!

Elisa - posted on 04/11/2009

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My son who will be 3 in may has HLHS. We actually completed all of his surgeries Feb.2008. He's definately been through alot not only has he had his heart defect but he's had a spleen taken out and we're being evaluated for a liver transplant. He's wears oxygen still 24/7 and if it wasn't for that nobody would know anything was wrong with him except for his road map of scars down his chest and across his abdomen.  He is such a little fighter and he's the happiest boy you'll ever meet. He's now starting to walk since he's a little delayed from all the hospital stays but nothing slows him down, he's quite a dare devil. Surgeries are a very stressful time but you have to put all your faith and trust into the doctor. For my son we were between 2 hospitals for his surgies and both of them gave awesome care. Feel free to message me whenever you'd like. If i can help you out in anyways I will.

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