Hypoplastic Right Heart Syndrome

Louise - posted on 07/04/2010 ( 33 moms have responded )

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Hi i'm 21 weeks pregnant and just found out that our baby has got HRHS (Hypoplastic Right Heart Syndrome). I know its more rare than the left but i cant seem to find anyone on the internet with a story about their child..I can only seem to find people with children with the left side.

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Jessica - posted on 11/28/2010

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My son has a hypoplastic right heart! Tricuspid Atresia with Hypoplastic right ventricle, and Transposition of the Greater Arteries. Facebook is a GREAT place to find other moms with kids with all kinds of heart defects, including HRHS. Also, Babycenter.com has a board on there of parents with children with heart problems.

Jill - posted on 06/17/2013

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I am the mother of a daughter born in 1976 with HRHS.(Hypoplastic right ventricle & tricuspid valve, atrial septal defect and pulmonary stenosis). She had 3 surgeries before she was 5 (never required a fontan) and then had a normal childhood from ages 5-19. Attended high school, was in the marching band, held a job, drove a car, enjoyed her friends and family. She also attended college (graduated with a social work degree) and that is when she started to deteriorate. She developed Protein Losing Enteropathy (those with Fontans can get PLE; She did not have a Fontan but her heart functioned like a Fontan). Her Tricuspid valve deteriorated to the point that she required surgery for placement of an articifical valve. 2 years later the artificial valve clotted shut and she required emergency removal of the artifical valve with placement of a pig valve. This surgery pushed her into right heart failure and in 2002 she had a heart transplanrt with many complications. My daughter barely survived (and my advice to you is to pursue a heart transplant before PLE ravages the body so severely). She lived 10 years after the transplant but was disabled on oxygen. The immunosuppressant for the transplant damaged her lungs and caused respiratory failure. She died last February at 36 years old. Please be very protective and proactive for your child. You want to avoid respiratory tract infections and, as your child's advocate, pursue every option for them. My daughter's life was difficult but she lived life to the fullest; I would not exchange a moment of it. God bless you all!!

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Tammy - posted on 01/30/2014

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hello, my daughter is now 7yrs old and was diagnosed when I was 5months pregnant with HRHS. She went through the 1st 2 surgeries and didn't need the fontane. we just had her appointment this week and she has a hole that has been there but has now opened to 7mm and needs to be repaired. over all you would never know anything was wrong with her. Sometimes she gets a little blue/gray around the mouth with to much exercise or when it is very cold out. Her normal o2 stats run about 85 for a high. She participates in dance and PE at school and holds her on. If there is a support group or a site for parents with children of HRHS could someone here email please I have been looking for more info and others to talk to that have gone through this. ranneytammy@yahoo.com
thank you and good luck to you

Jenna - posted on 01/10/2014

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My 8 year old daughter has HRHS an she has had the prodedures that they do when they are young an at this point she is doing excellent at her last cardiologist appointment the doctor told me if she didnt have her scar that they would have never known she had heart problems. Her last surgery was the final fontane the doctor put heron several different medications including Viagra. I decided after her taking several different medications for 6 months to ease her off them an her cardiologist told me I made the right calll so now she is only taking asprin not all children are the same but I know that a parent knows what is best an as a parent I know my daughter is strong and I do believe every morning she wakes up is a miracle not only that they tell you that 1 out of 100 children do not require the use of the heart lung machine during surgery and with every surgery the hospital stay gets longer then again not always true but if you are fortune after the final fontane to have a short stay I will gaurentee that there will be multiple hospital stays for 4 monthes after atleast thats what happened with my daughter.

Shona - posted on 12/19/2013

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My son has HRHS and will turn 16 in May! He was so tiny at birth and now is HUGE! He is cleared to throw shot put and discus for his high school track team in the spring ( due to a very understanding coach that will not require running etc). It's so great that he gets to try a sport! He is happy and healthy! We have check ups only every 9 months now, because all scans and oxygen levels alway look fantastic. :)

Faty - posted on 05/14/2013

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Hi Tamara
Just wanted to take news from your little princess.
I have a little baby boy diagnostics With HRHS And triscupide, Dvc défect And some more. Hé just had his Glenn Surgery
And doing well. As you I didn't know only one day after giving birth
It was the worst moment of my life but now where he is. An happy baby that makes mom happy too
Hope to receive some news xx

Faty - posted on 05/14/2013

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You Know They are doing so Well now in Surgery And in 10 or 20 Years Doctors will probably find better plan the help our children to grow up without any problem and will be able to live like the other children. Good luck to you and your family

Jenielle - posted on 10/09/2012

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My baby had hypoplastic right vent also along with Down syndrome which made it even more uncommon. I think you will be fine, trust your heart.

Belinda - posted on 08/31/2012

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We have a very large closed group for all who are effected by HRHS on Facebook - lots of people to ask questions from and an excellent support group.

Clare - posted on 08/29/2012

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my son just had his fontan on 25th july, out and home in 11 days . doing great he's 3 years old and starting playschool monday

Chanel - posted on 08/24/2012

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hey there. my daughter has hrhs along with a few other defects, a feeding tube (not as bad as it sounds at first, allowed my daughter to grow and me sleep through the night!!) and also lots of other random hospital stays. i guess the only things i can say, which i say to all the other moms i see at the hospital through support groups and random meetings, is you get used to it. its our normal. my daughter is 2. we spent the first 4 months at a hospital more than an hour away from home. the ronald mcdonald house was AMAZING. made sure to talk to the social worker about reimbursment for gas to travel and meal vouchers and other programs set up to help parents like us. im unable to work as no daycare will even look at my daughter, but i also know her better than anyone and can tell days before any doctor could when shes sick. i hear all the time just looking at her no one would ever know she has this disability. we are currently getting the wheels in motion for her next and hopefully final surgery (before a transplant most likely later in life) the new technology could take us in a different direction in the future but for now thats our plan. the docs scared the s*** outta be about all the trisomy and down syndrome stuff. i chose not to do a an amnio because i had already known this baby for 26 weeks when i found out she was sick and there was no way it was gonna matter what else i found out, i was gonna meet her. i was on bed rest at the hospital for a month before my 'planned emergency c section' which was basically just that they knew she was gonna crash but wanted to get me as close as they could to 40 weeks. i made it to 36. the nurses still laugh because they got her out and showed her to me and i guess i just said ' yeah i knew shed be super f***** cute. now take her to the nicu and make sure shes stable' a couple hours later they wheeled me up and i got to touch her. i made sure i was the first of my family to kiss her. in this situation knowledge is power. research. know everything you can, because you wont be able to control anything else. feel free to email. chanelurso@gmail.com. im located in wisconsin. good luck and god bless :)

Kelli - posted on 08/23/2012

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My son was diagnosed with hrhs at 21 weeks. I have been referred to multiple specialist and they have scared me to death with down syndrome , trisomy 15 or trisomy 18... I have made it perfectly clear about my biblical beliefs ...my question is does your child still meet all of her mile stones? I have 2 very rambunctious boys already will my heart lovie be able to keep up?

Jovanna - posted on 08/19/2012

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Hi Louise my name is Jovanna. I have a daughter who just turned one that was born with HRHS, ASD,VSD, CRISS CROSS VENTRICLES. I have a Facebook page for her called Emery's Heart. In Feb. She had her Glenn surgery * second open heart surgery* if you would like to talk or ask me questions please message me on her fb page or email me at Emerysheary@yahoo.com p.s I talk to many heart moms but only know one with a child that has HRHS. It is very rare but kids with HRHS do very well. Hope to hear from you soon :)

Amanda - posted on 06/26/2012

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hi ive not been on for a bit but i lost my little boy at 7 weeks old i dont want to scare u but if theres anythink u would like me to try and explain i will try x

Danielle - posted on 06/26/2012

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Jennifer:

correction to my email : its daniellemleary@yahoo.com sorry about that.

Danielle - posted on 06/26/2012

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To Jennifer:
I am so sorry to hear what had happened to you and your baby. At 21 weeks, I lost my little girl to Trisomy 18. She had so many anomolies that they had no idea what the cause of them were. She had 2 heart chambers instead of 4, her lungs were not fully developed, hydrocephalus, and so much more. I hope you are doing okay. I was able to get my little girls hand and footprints and had her cremated. I felt that was best for her.

Well, I wish you the best of luck. It's been 6 years for me and I still mourn Amber Marie. Altho, I do celebrate her birthday every year (she was breathing when she was born, but was not strong enough to keep going). If you ever need to talk, please feel free to contact me, daniellmleary@yahoo.com. alright? take care.

~Danielle~

Tamara - posted on 06/09/2012

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Hi Louise,

I have a 8 year old daughter born with HRHS. You are lucky you found out now, I didnt know anything was wrong until after she was born. They took her away and flown her down to Ann Arbor, Michgan to the University of Michgian Hospitals. For the first 4 days of her life I wasnt able to be with her. I had to have a emergency c-section and had to stay in the hospital for 4 days. Lucky for me my mother went with her so she wasnt alone. I got to be with her when she was 4 days old and found out all about her heart issues. Its rare beacause of it being the right side and rare because she is a girl. Most kids with either the left or right are boys. I couldnt believe that my baby had all these issues: HRHS, PS, TGA. When she was 1 week old she had her first open heart surgery..they placed a shunt in the ductus that usually closes after the baby is born a week later. But because of her low oxygen they needed to keep it open to help with her levels. They explained to me that she would need 2 more surgeries called the hemi-fontan. When she was 6 months old she had the 2nd surgery called the hemi. When they were doing the surgery some of the electrode around the heart were damaged and caused her heart rate to drop while she was sleeping in the low 40s. So they had decided to fit her with a pacemaker at 6 months old. Hospital stays were 2 weeks at birth and about 2 weeks at 6 months old. When she was 2 years old she had her final open heart the fontan. We were there for a little over a week. She has had 8 heart catherizations, most right before surgeries. She sees her cardio doc at least 2 to 3 times a year more when she was little. Anjelique my daughter just got fitted with her second pacemaker. Thats just the start of our story...if you have any questions please contact me. Its been a long tough road and I know its gonna be hard just remember one thing its all for the good of your child. Ill be here if you just need someone to vent to that isnt family. If you believe in GOD pray everyday for strength to be able to deal with all this.

Jennifer - posted on 07/10/2011

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Unfortunately the ultrasound was redone a few days later and many other abnormalities were found leading to thd diagnosis of a fatal cardiac defect. Therefore we had a D/C performed. So I'm unfortunately healing at this point and praying that my statistics with the next pregnancy aren't horrible. I wish all of you well.

Amanda - posted on 07/10/2011

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hi im 31 weeks pregnant and at 26 weeks i found out my little one has critical pulmonary stenosis with an intact septum i kno its in his right side anybody can tell me how he will be when hes born plzx

Anna - posted on 06/29/2011

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My daughter is 5 and is HRHS - doing well and happy. I found this online group to be really helpful - http://www.hypoplasticrighthearts.org/

Saving little hearts also does parent match between families that have similar age and similar diagnosis across the US. I got paired with a wonderful mom in Kentucky and I live in California. We compare notes and our kids our similar ages. We call each other, email, and FB. It's been great.

I also have kept a carepage/blog for 5 years. You can find our story and others with similar heart defects on carepages. Just search for summertimes and you can read about our experiences.

Every HRHS kid is different and depending on the severity of the defect...warrants a different treatment. Some don't need surgery, others do..and those that do may go the 1 1/2 ventricle route and others with just a single ventricle. So don't be overally concerned that your baby's treatment and outcome maybe different than others. Every heart is different.

www.carepages.com - summertimes.
Anna

Belinda - posted on 06/08/2011

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Are you on FB? I have our story up, and my son just turned 4y with HRHS and DOLV, we are going in for 3rd surgery 6/13/11.

Jennifer - posted on 06/04/2011

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Help!!! I am 17 wks and my baby was diagnosed today with Right Ventricular hypoplasia. I'm terrified and at my wits end.
I have no idea what to do and what I may be in store for. My husband is being so supportive but I think my constant tears are not helping him hold it together.

Chanel - posted on 04/26/2011

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my daughter is 10 months old and has HRHS. i found out around 20 weeks as well. i hope all is well and to hear from you soon.

Clare - posted on 12/27/2010

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haven't met any one whose baby has the same condition.... how are you doing ??

Clare - posted on 07/09/2010

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my son has hypoplastic right heart... I found out when i was 29 weeks.. he is just turned 1 and is doing great. they actually diagnosed him with tricuspid atresia and hypoplastic right ventricle, is ur babe the same.... hope i can help you.... i have a years experience now...

Anna - posted on 07/07/2010

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Hi, Louise! There are groups out there just for HRHS. I don't have any links, but if you go to YahooGroups! you should be able to find at least one group and I believe there is a group on Facebook. They may just call it HRH instead of HRHS, so that would be another way to look for it.

Best of luck to you!

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"

[deleted account]

i found a couple of links to get you started.
Childrens Heart Foundation - http://www.childrens-heart-fed.org.uk/
Heartline for children with heart problems and the families - http://www.heartline.org.uk/index.html
Little Hearts Matter - http://www.lhm.org.uk/

Hope they help. If you ever need to talk, feel free to add me. I was 20 when my daughter was born, and went through all the emotions and fears of surgery and health and the future. She doesn't have the same problem as your little bubby, but i do understand, the feelings and emotions you go through.

Louise - posted on 07/05/2010

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thank you..im from wales in uk...im seeing the cardiologist on thursday so i will ask him then..thank you for your help! x

[deleted account]

I am not sure where your from but there is an organisation in NSW Australia called heart kids Which is designed to help Parents and caters with information they need and support for families that have or a having a child with heart problems. They also provide names and numbers for families to get in contact with other families with the same problems. It was a lifesaver when my daughter was diagnosed with her heart problems. When you see you cardiologist next maybe ask him if he can put you in contact with any groups like this that you can get the support and information you need.
I hope this helps

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