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Hypoplastic Right Heart Syndrome

Hello,
   Our child was just diagnosed, 15 weeks pregnant, with hypoplastic right heart syndrome.  I am having a hard time finding any information about it because it is much more rare than the hypoplastic left heart syndrome.  I have read that treatment for both conditions is the same, but I cannot find any information about survivability rates, are they the same for both conditions?  And what are they typically?   Thank you for your help
7 Responses
Avatar universal
My son, currently 2 yrs old, has hypoplastic right heart (among other heart defects).  And you are right...there is little to no info available as it is much less common than left hearts.  But a cardiologist did comment once that if you had a choice between having a hypoplastic left or right, he'd go with the right.  But he pointed out that the only drawback to that is there are fewer doctors with right-heart experience.
Here are a few links I know of:
http://www.hypoplasticrighthearts.org/welcome.html
http://www.childrenheartinstitute.org/educate/defects/hypor1.htm

I'd also recommend finding if there is a chapter of Mended Little Hearts (www.mendedlittlehearts.org) in your area - or some kind of support group.  My wife and I helped start a chapter in our area (San Antonio) this past August. (http://mlhofsa.schendelsworld.com/).

Hope this helps!
539407 tn?1213881384
My sister had this and she lived to be past 28 years of age and had many other complications so you should be just fine...Good Luck...

Jules
Avatar universal
Last stroke June 8 2009  MRI of Heart shows nothing, but yet she has had multiple strokes, and now one of the repercussions, is siezures. If any body has experienced this please contact me at ***@****
Avatar universal
my son was diagnosed with Hypoplastic Right Heart Syndrome when I was 5 months pregnant I was very scared my OBGYN sujested an abortion but I got a second opinion and I do not regret it eventhough is hard to see your child go through open heart surgery twice. My little man is now 4 yrs old and had his last surgery and he is a very happy, loving and active little boy and no one would ever guess all he has been through OR that he has anycondition. I love my son and would go through it all again to have him with me he is worth all the sleepless nights and all the hospital sleepovers he is my little angel and has a great purpose in life.
Avatar universal
Agreed. Dd had her first surgery and soon to have her second. She's so beautiful and precious. I get stopped all the time because how perfect she looks. I wouldn't trade her for anything. I am expecting good outcomes. Dr. Pizarro of nemours. At Alfred I DuPont is a great surgeon. There is hope! God is the giver or life and only He can take it away. I know she'll be alright!
Avatar universal
we were actually diagnosed with  the left syndrome but are being told the right is too thick to perform the procedure; anybody have any experience with this?
Avatar universal
My youngest daughter was born with Hypoplastic Right Heart Syndrome.  She is now 15.  When the defect was diagnosed before she was born the Dr. told us that termination was an option.  I said that even if she has a 5% chance of surviving we had to give it to her.  Wow, I am so glad we did!!! She survived all three surgeries with flying colors.  She plays Volleyball, does Track & Field (Discus, Shot-put & Javelin) and is on the Bowling Team.  My other daughter is not athletic at all, of course my heart baby is.  I let her decide what works for her.  She only has to take one baby aspirin a day. You would never know to look at her that she is a heart baby.  She is the sweetest child and is so compassionate.  She is my angel on earth.  It was hell going through the surgeries, but Children's Hospital and Dr. Starns in LA were a godsend.  We did have one extra problem.  She was getting out of breath when she was about 3 yrs. old.  I figured it was the heart problem, but my husband said no something is wrong.  He kept taking her in to the hospital over and over and they said nothing was wrong.  Finally one day in the hospital elevator when he was finally ready to give up a women asked him what was wrong.  She just so happened to be a doctor.  He told her about our daughter and she said take her immediately to an Ears, Nose & Throat Doctor.  They scoped her and found out she had a vascular ring and as she was getting bigger it was strangling her.  I believe the Doctor in the elevator was an Angel.  She saved my baby. Her Cardiologist at the time said that without complications she should live to be around 50 years old.  Hopefully by that time medical science will have something to extend her life.  Having her was the best decision of my life, she is priceless.
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