Hypoplastic Left Heart Syndrom

Dana - posted on 02/10/2010 ( 22 moms have responded )

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I am currently 31 weeks pregant and my daughter Rebecca Faith has hypoplastic left heart syndrom. The left side of her heart didn't form properly and she will have to have 3 surgeries to make her heart work for her body. As she gets bigger the doctors are ablt to see more of the picture and have found 2 very serious complications. The hole between the two top chambers is getting smaller then it's supposed to be and she has restrictions in her pulmonary veins. At this point the doctors arent optimistic about her chances after she is born. She will be born by c-section and taken right into surgery to try and take care of the restrictions she has. She is strong right now and loves to move around despite the small space she is in. If anyone has been through this or is facing the same thing please write back. I would love to be in touch with other moms who have the same issues.

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Angela - posted on 07/30/2011

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I am 21 weeks and due Dec. 8th and last week we found out the Lord has blessed us with a little girl, Lydia Reese. We also found out she has HLHS and we were referred to UAB. This week UAB confirmed HLHS and we meet with the Pedi. Cardiovascular surgeons in Sept. This really hit us like a ton of bricks. However, my husband, family, and friends staying positive and lifting up prayers to the Lord. I will mention all of you in my prayers. Please keep Lydia Reese in your.

Anna - posted on 06/03/2010

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Hi! My son was only given a 5% chance of surviving his first open-heart surgery and then a 25% chance of living to the age of 5. You have to remember that statistics when it comes to our children are basically meaningless. Our children have a 50/50 chance on any given day during surgery, before surgery or after surgery of "making it."

Our job is to make their lives as meaningful as possible. We have to love them, support them, and make the most informed decisions we can for them. We are their greatest cheerleaders and advocates. You have to keep the faith and Believe, Believe, Believe.

Alexander is now 15 years old and will turn 16 on August 11, 2010. He is in high school and college studying robotics. The plan is for him to graduate from high school May 2011 and from college with an Associate's Degree in Robotics in August 2011. If someone would have told me that this was the future Alex would someday have when he was facing his first surgery, I wouldn't have believed it! It seems almost too good to be true. But what I've learned with Alex is that you never know what God has planned for you and you just have to make the most of every day and believe in tomorrow.

I believe God has a special plan for each of our children. Some children don't live as long as we would like, but if we've helped our children live fully, then we can embrace the fact that we've loved fully and done the best job as parents as we can. I think we have much to learn from our children and they have much to share with the world, no matter how short their stay on earth may be.

Best of luck to you and Rebecca!

Sincerely,

Anna Jaworski
mom to Joey (18; heart healthy) and Alex (15; HLHS)
www.babyheartspress.com
www.congenitalheartdefects.com
author of "Hypoplastic Left Heart Syndrome" and "My Brother Needs an Operation" and editor of "The Heart of a Mother" and "The Heart of a Father"

Arica - posted on 02/25/2010

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My youngest daughter was born with Congenital Heart Defects. She had a hole in her heart and an extra artery. The artery closed up on its own but the hole didn't and caused a defective muscle to form in the right chamber of her heart, thickening it. In Sept. of 2007, at the age of 5, she had open heart surgery to remove the thickened muscle and repair the hole in her heart. She has been doing great since. The only remnants she has of the surgery are the scars on her chest. She is very active and always on the go. She sees her pediatric cardiologist once a year.

Donna - posted on 02/25/2010

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hi tressa
my daughter chloe has got HLHS she is now 12 years old has had all three op and when she woz 4 yrs old i had another child and hes healthy i woz very nervous and frightened just in case it happned again but my daughters consultant woz very good i had my first scan very early and then kept an eye on me through out my pregnancy and everything is ok . if ure worried any women would b wot we ave bin through b4 go and c the consultant and put ure mind at ease ....i hope this helps xx

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Danyell R - posted on 09/30/2012

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how is your daughter olding up. i see you posted ^^ in 2010.

im 38 weeks, gettin a c-section in about a week and she has hlhs vsd and tapvr.

Angela - posted on 07/30/2011

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I am 21 weeks and due Dec. 8th and last week we found out the Lord has blessed us with a little girl, Lydia Reese. We also found out she has HLHS and we were referred to UAB. This week UAB confirmed HLHS and we meet with the Pedi. Cardiovascular surgeons in Sept. This really hit us like a ton of bricks. However, my husband, family, and friends staying positive and lifting up prayers to the Lord. I will mention all of you in my prayers. Please keep Lydia Reese in your.

Margareta - posted on 04/15/2010

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Hi hun, so sorry to hear Rebecca Faith has gained her wings, thinking of you and you family xxx

Dana - posted on 04/14/2010

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Thank you all for of your encouragement and prayers. Our sweet baby Rebecca Faith was born on April 6 2010. Her complications were numerous, and unknown to us before birth. She went home to Jesus on April 7 surrounded by love and family. She will live on in our hearts and hopefully help other children that have the same heart issues. We donated her heart to Children's Hospital so doctors can get a better understanding of the defect.

[deleted account]

My daughter, Ruby, was born with HLHS along with other serious cardiac and arterial issues. She had her first surgery at 3 days old, another at 5 days old, another at 7 days old and then passed away after her fourth surgery at 9 days old. Unfortunately, her extra issues really meant that she didn't ahve much of a chance at all.

I cannot fault her care. They did all they possibly could for her, treated her with love, respect and kindness and her little life was one surrounded by such great caring - I'm sure she was aware of this.

We have been told that our chance of having another baby with heart problems (this stat includes innocent murmurs!) is 5%. With that in mind and knowing that if we had to go through what we did with Ruby again, we would do so in a heartbeat, we are trying for another child.

I don't believe that her life, albeit so short, was any less precious or important than that of my two living children. She was precious, she was here for her appointed time and when called, she answered and went home.

There are so many children out there living with repaired hearts that you would not be able to pick from a gourp of kids unless you could see the scars on their chests. Sure, they are left with the possibilities of future complications after their 3 stage surgeries and may never have the same longevity that most take for granted, but their lives are full and happy after the initial hurdles have been leapt!

Wishing you and Rebecca all the best for the 6th!

Take many photos, videos and spend as long as possible cuddling her. She will want to see what she ahs triumphed over as she gets older. Tell her how proud you are of her and how much you love her - it will help both her and you.

Take care ...

[deleted account]

Hi Dana, My Son Matthew, who is now 4 and very much thriving, was diagnosed at our 20 week anomaly scan with hypoplastic left heart, large VSD, mitral valve stenosis, transposition of the great arteries, critical pulmonary valve stenosis and double inlet left ventricle. He had his first surgery at 5 days, then he had his Glenn shunt at 3 months and the 3rd stage of his Fontan circulation last May. He has had a few complications, mainly with infection in the early days, but he has pulled through and is so strong now you wouldn't believe he has a heart condition looking at him. He is doing great and we stay positive all the time. In between the hospital stuff, life is pretty much normal and he can do everything his friends do, just runs without as much oomph!! He is truly an inspiration to us and has taught us to appreciate and enjoy every day to the full. Good luck with your little treasure. Julia xx

Margareta - posted on 03/20/2010

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Hi Teresa, I am a member of a group called Hope For Children with HLHS (They also have a group on facebook) and I know there are quite a few women on there who have heart healthy children younger than their HLHS'er. Hope this helps you.

I have a 2 year old HLHS son called Kian, he is really active at the minute and we have been told he will need the 3rd stage called the Fontan at between 3 and 6 years of age. I was 28 weeks pregnant when I found out about his HLHS and got given the options they give, I am so glad that I chose the 3-stage surgery and would again.
Anyone with an HLHS child (living, passed or pregnant with can add me if they like. xxx Margie (Margareta Barrs on fb)

[deleted account]

hi there, my 1st born, Nathan was diagnosed with hypoplastic left heart at 20 weeks pregnant, we were then sent to a better hospital who could perform better scans n give us the best chance for our wee boy, sadly though all the scans with the top heart doctors showed his heart was just in too bad a mess and we were told he wouldnt survive the pregnancy, he was born sleepin at 22 weeks on the 7th march 2008,
wish u all the luck and for a better outcome as you've got this far xx

Hayley x

Dana - posted on 03/06/2010

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I found out on Wednesday ( March 3) the doctors decided that April 6 is the day. I'm excited and very nervous, but glad I finally have a day to look toward. I have a daughter aleady and I delivered her naturally, a c section is new for me. Especially since the only time I've been in the hospital is to have her. Never had surgery before or any broken bones. We are delivering at Children's Hospital in Philly and all her care will be there as well. So far we are very happy there, everyone is very nice and answers all our questions. And makes us feel comfortable. Thanks for the compliments on her name, Rebecca was my husband's grandmom's name and she was a strong person and a character to say the least. And Faith just because we have faith that God is in control and will be right there with us every step of the way. We have so much support from family and friends, even people we haven't met. We appreciate the support and prayers. Thank you again for you posts.

Charlotte - posted on 03/06/2010

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You are certainly not alone. I have a son with Tricuspid Atresia who has undergone 4 open heart surgeries in his short life. He is 3.1/2 and doing fantastic! God has truly blessed us and I pray that he will do the same for you and your family. We also have a 6 year old who has no CHD. Keep postive and have faith. Where is your daughter being born? Are you happy with the surgeon and the hospital? There have been lots of advancements in the treatment of CHD in the last decade. You must be optimistic! You owe it to yourself and your daughter. It seems like you already are with the name you have given here! Beautiful name and so fitting. God bless you!

Dana - posted on 03/02/2010

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Thank You to all the moms who responded. All the posts are encouraging and helpful, it's nice to know that my fears and worries are not just me being crazy. I am 34 weeks along now and doing well. At the last CHOP appt she didn't respond well to the oxygen test, but is still growing well and moving alot. She will be here before I know it... they are scheduling a c section and it will probably be either the last week in March or the first week in April. She will be evaluted after birth and then most likely be taken to surgery right away to stabilize her so that we can go forward with the first of the three surgeries. So thank you for all your encouragement!

Dana - posted on 03/02/2010

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Thank you for responding Tressa, I'm so sorry to hear that your son passed away. I remember asking the doctor if we wanted to try for another child after Rebecca about a the chances of the next child having a similar heart defect and they did say there is a greater chance. The defect wouldn't necessarily be the same but it is possible. Of course they can't say for sure...

[deleted account]

Hi Dana,

my son wasn't diagnosed with HLHS until he was 4 days old. he went throught the first 2 heart surgeries , but shortly after developed an infection in his blood called sepsis. he passed away at 5 months,3 days old. that was 5 years ago. I do wish you the best of luck and you are in my prayers. I know it is not easy and it is something a mother never expects to hear and it turns your world upside down. keep in touch let me know how everything goes.

Just recently I found out i am expecting again and i am trying to be positive about everything. I just hope this baby is healthy. question for all you ladies...Have any of you had another child that was born healthy after having a child with HLHS ? I would really love to know thank you in advance. -



Tressa

Chris - posted on 02/21/2010

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Hi Dana. I didn't know my son had HLHS until after he was born. He just turned 26 months and it has been coming up on two years since his Glenn. His cardiologist said when he hits 30 pounds we'll get figuring out his third surgery. He's only 25 pounds now, a peanut, but otherwise doing great!

I'll keep you and your daughter (beautiful name, BTW) in my prayers.

Chris, Eddie's mom

Kerry - posted on 02/21/2010

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My son was diagnosed with HLHS when I was 22 weeks pregnant. He was three days old when he had the first surgery, 4 months for the second and 3 years old for the third. He si now 5 years old and doing well. Ryan also had an extremely narrow aorta and his pulmonary flow was not very strong. Feel confident that you and your doctors have a plan and are ready. We did the same thing adn though we lived in Virgina, my son was deliverd adn had ihis surgeries in Philadelphia, at CHOP. There will be tough moments, but there will also be good ones, as these kids are fighters through and through.. My advice is take each moment as it comes. Focus on what you know now, not what may or may not happen tomorrow. You can drive yourself nuts with the what ifs. There were many days in the hospital where I took it minute by minute, which seems a bit silly as I look back, but it kept both me and my husband sane and strong. I wish you the best.

Donna - posted on 02/20/2010

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hi i found out my daughter chloe ha d the same heart condition through a normal scan at 21weeks i woz devistaed shes now 12 years old she shad her first op in 98 when she woz 2days old , her second op when she woz 11months old then her third when she woz 3yrs old as ive said shes 12 yrs old fit and healthy not very tall that dont bother her shes on medication apart from that bin very lucky ....shes an excellent swimmer and starts secondary school in this september ....i no wot ure both r going through x

Julee - posted on 02/16/2010

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Hi, I understand your fears and worries. I found out my daughter had a heart problem when i was pregnant with her as well. Originally they thought it was hypoplastic left heart as well, but they couldnt tell for sure until after she was born. She had her first surgery to correct a narrowed aorta at 2 days old. it was then they realized she instead had Shone's complex, which is a series of 4 problems that will follow her through out life. She had her 2nd surgery at 3 months old, now she is over a year old and is a happy great baby. She is asymptomatic so she appears fine, even though her heart problems are still there. Add me to friends if you ever need to chat, i know it is terrifying but stay strong, babies are stronger than we give them credit for. good luck to you and please keep us updated.

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