Hypoplastic Right Heart Syndrome

Faty - posted on 05/14/2013

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

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

Michelle - posted on 01/31/2013

My brother has hypo plastic right heart syndrome.

Jenielle - posted on 10/09/2012

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

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

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

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

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

Emerysheart@yahoo.com sorry

Jovanna - posted on 08/19/2012

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

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

Jennifer:

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

Danielle - posted on 06/26/2012

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

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

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

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

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

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

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

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

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

Jessica - posted on 11/28/2010

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.

Clare - posted on 07/09/2010

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

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"

Louise - posted on 07/05/2010

Thank you xx

Julie - posted on 07/05/2010

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

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

Julie - posted on 07/04/2010

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