Double Outlet Right Ventricle, VSD, Pulmanary Stenosis...

Chanel - posted on 03/05/2009 ( 25 moms have responded )

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My son was diagnosed the day after we were released from the hospital after I gave birth. He is currently 4 months and so far has had a heart catherization and also has had his first of 3 surgeries, the first was the banding of the pul. artery. He hasnt been symptomatic...he is growing extremely well and eats like he is twice his size. Has anyone had children that have also been diagnosed with this?

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Michelle - posted on 03/12/2010

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Hi everyone,

My son was diagnosed with Right Atrial Isomerism at 2-days-old. He is now 9.5 months-old and doing well. It sounds the same as your son - he has DORV, unbalanced AVSD, subpulmonary stenosis, TAPVD, bilateral SVCs, enlarged right kidney, he is asplenic, and his stomach and liver are on the wrong sides of his body. We, unfortunately, didn't know about any of this prenatally so it was a HUGE shock for us pretty much immediately postpartum. Our boy didn't need the PA band either, his stenosis worked in his favour in that respect. He was satting around 90 and only started to drop around 4.5 months of age. He had his Glenn surgery with a left-sided Coles repair and atrial septectomy at 5.5 months. His in-hospital recovery lasted 3 weeks and was up and down. We were warned it would be a process of two steps forward, one step back, but we weren't prepared for just how difficult it would be. He seemed to progress slowly for the first 2.5 weeks but he turned a corner one day, and we were released 3 days later. His in home recovery has been pretty good. He sats in the low 80s now but he seems to have adjusted. His weight gain is good, he's almost up to 50th percentile by now. He was delayed from starting solid foods so we're trying to catch him up on that but his gross motor skills seem to be on track for a 9 month-old. Considering there were so many weeks when he couldn't use his chest/torso muscles, he's doing great! When we first found out about his condition, we were afraid to do any researching outside of hospital resources because we were afraid of what information we might find. As he grew stronger and we grew more confident, we started looking for info and for stories from other parents whose children have CHD and particularly RAI. We are not afraid anymore. We are encouraged. Thank you for sharing and offering hope.

Carmen - posted on 04/29/2010

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my 3yr old has been diagnosed with hyperplastic left heart syndrome which sounds simular to this she was diagnosed when i was 5month pregnant.after birth she was rushed to boston children hospital and had her first open heart surgery.she has under went her second surgery newark nj. around april of 2009 and now she will be going for her catherization on may 18,she's been growing well dont get much,but shes super smart.she's very energetic and she loves everyone .good luck to your lil man

Melissa - posted on 03/15/2009

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My 3 1/2 month. He has yet to have any surgeries but we have been in and out of childrens for the last 3 1/2 months. He is very small and is on an NG(feeding tube).

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Christy - posted on 11/03/2013

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I have read so many post. On dec 30 1996 I was going in for a scheduled c section. After delivery the doctor noticed something not right with my baby girl. She was rushed to children's hospital in Columbus ohio. At 6 days old she was diagnosed with DORV, pulmonary stenosis, asplenia, situs inversus, TGV, and a yet baby. At four weeks she had her glen shunt done at 9 months by lateral shunt at age 2 one of the final steps to the Fontan surgery then at 4 years 8 months and 24 days was the final repair for her surgery. Along hard day and countless hours of surgery due to complications. She was finally stabilized around 6 pm but had to go back on the bypass machine. Lindsay suffured a stroke around 645 and the doctor was pumping her heart by hand. At 743 all machines was removed and she passed away. Her heart was donated to science along with other internal organs. Medical technology has changed so much over the years it's unbelievable. My heart goes out to all the children with congenital heart disease and to the parents. Just wanted to share my story and I love to keep Lindsay's spirit alive.

Alexandra - posted on 02/18/2013

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Hi everyone I'm new to this so bare with me four days ago I went with my fiancé for our 22 week anomaly scan everything was going well until they moved on to my baby's heart. After calling in an expert they told me that she has something called double right outlet ventricle as this could also be a sign of a missing chromosome we also had an amnio done as I'm only 24 and every other part of my baby is perfect hopefully the odds are on our side and it all comes back negative. I've tried to be proactive and have done lots of research online but there isn't too much information on the prognosis for babies with this defect. I'm trying to stay optimistic and be brave but to be honest I'm really struggling it just seems so unfair that my baby has this I'm sure all other mums with poorly babies feel the same although I have a very supportive family and friends I still feel very alone. I know this is all still very raw and hopefully I'll start to feel better once I have more information but I was hoping for some of your stories?

Alexandra - posted on 02/18/2013

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Hi everyone I'm new to this so bare with me four days ago I went with my fiancé for our 22 week anomaly scan everything was going well until they moved on to my baby's heart. After calling in an expert they told me that she has something called double right

Erin - posted on 06/09/2012

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Tamara - it's great to hear she's doing well with the pacemaker. Caylen's pacemaker (her 2nd) handles things much better than the first one. She still has a lot of problems with different arrhythmias, but is better than it used to be. Caylen, too, is small for her age, a issue I think a number of our kids have with severe heart issues.

Tamara - posted on 06/09/2012

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My daughter was diagnosed at 2 days old with all thee above and hypo-plastic right ehart syndrome..when she was 1 week old she had a shunt put in then at 6 months old she had the hemi surgery and a pacemaker and then when she was 2 years old had the fontan surgery..she then she has been a pretty normal healthy little girl..at 8 she is only 42 lbs and 43 inches tall..she had a new pacemaker put in this last year and doing well..she does get sick a lot and has problems with her oxygen levels

Catherine - posted on 04/29/2012

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My 2 girls have all those plus more. There heart is own the right turn around backwards. They r doing good. the ages r 18 and 20. They had have 9 open heart surgery's between the both of them..



Here is my e-mail if u wanna talk---katiebug101@yahoo.com---





Catherine Scherzer

Erin - posted on 04/21/2012

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Btw - Caylen was born with 14 heart defects...so know that despite all that, there are so many new techniques, meds and technologies to help our kids!

Erin - posted on 04/21/2012

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There are many kids (and adults!) with TGA and DORV! Many are doing very, very well. There is a HUGE community on FB (but just be careful as sometimes some people aren't what they seem). I, too, worried so much when Caylen was born. She has heterotaxy (a rare, complex birth syndrome including many defects) and there was so little info out there. I had to find other families to talk to, and their experiences helped me much more than the "formal" info. Please don't hesitate to ask if you have any questions or need to talk. My email is msheartmom@yahoo.com. I'd be happy to talk anytime!

Odaly - posted on 04/21/2012

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Oh good!! From what ive read it seems like a very good hospital and feels better to hear positive feedback about it.He has been feeding normal since he came out the hospital and his cardiologist says that the goal is to get him,to be 6-9 months before they perform surgery unless something changes. The past few days ive been scared out of my mind thinking the worst but reading your daughters success helps more than you could imagine. Good luck to you and your family hope Caylen's feeding gets better!

Thank you

Erin - posted on 04/21/2012

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CHOP is a fantastic hospital! I know several families that go to CHOP. My daughter will be five in a couple of months and has DORV, TGA and PS (artery and valve). Caylen had her heart rebuild and first pacemaker done at Michigan due to the nature of her rebuild (she needed a procedure that hadn't been used in over 40 years). However, CHOP handles many children like you son. It sounds like he's doing great if he's taking a bottle. Caylen had a NG tube until she was one and we still have eating difficulties. I don't know of any formal resources that talk about how kids like our's that tell you what you want to know. Personal experiences from other parents really have been the best for me.

Odaly - posted on 04/21/2012

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Hello chanel gloster (or to anyone who has a child with Double Outlet Right Ventricle, VSD, Pulmanary Stenosis) hope your son is doing well. My son too has DORV, VSD & pulmanary stenosis, and a transposed vessel. He was diagnosed 2 days after he was born and it was all all so overwelming because i had no idea of this until then that day! It hit us by surprise. My son is 7weeks today weighs 8Ib 5oz(2weeks ago) and has been drinking 2ounces of milk until last night and today he drank 3 he has been home with me. He sleeps and acts very normal and i show him so much love!!. when i first learned about his condition i had no idea what to ask because truthfully didn't understand it one bit-i have a doctors appointment on 5/8 and until then would like to understand more from personal experience. And do you have any sources that educate on the step by step growth of a baby with this condition?! Anyone with a child that has Double Outlet Right Ventricle, VSD, Pulmanary Stenosis and transposed vessel- Please any information would be appreciated so much and the support even more! my whole family is in philadelphia and i am in in Florida with just my son.The support from his father is pretty much just financial. I just quit a job I valued very much and will be moving to philadelphia to have the support of my family and stay home until i could be able to go back to work and give my son the life he deserves.





Thank you,

Ordalis(mom)

&

Julian

Erin - posted on 03/25/2010

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@Melissa Moody - Melissa, Caylen had a NG tube until she was nine months old. She was very small, too. However, she started growing some once she was eating and past the age of one. Hopefully, your little one will, too!

Erin - posted on 03/25/2010

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My daughter, Caylen, is 2 1/2. She was born with double right outlet, VSD, pulmonary stenosis, dextrocardia, heterotaxy, AV discordance, sick siuns node syndrome, among others. She had her first OHS at six months old, a second OHS two weeks later to implant a pacemaker. She is doing great, other than issues with arrhythmia. She is on several VERY STRONG meds to control it, with a catheter ablation to happen in the next couple of years. Caylen is very active. She doesn't sleep or eat much, but we are dealing with those. Her stomach and liver are in the wrong places, but haven't had much of an issue there. Her intestines were malrotated, but repaired at five days old. We have a few issues with that, but nothing too bad at this point. Caylen has a spleen that works okay, which is rare for heterotaxy kids. We keep her pretty isolated during the flu seaon as just a fever can put her in the hospital for arrhythmia issues, including cardioversions.

Jen - posted on 03/13/2010

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Kayden's stomach and liver are in the correct place...there was some confusion during the 2 ultrasound they first though his stomack and liver were on the wrong side but after another look they determined they were in the correct place and we have not herd anything from the doctors about them being in the wrong place...I find that odd they didn;t pick up the CHD during the ultrasound because they told me it was very easy to see there was a problem...they showed us pictures of normal fetal echos and showed us the difference and wow there was a huge difference and defently noticeable! Kayden had surgery at 5 months old and spent 11 days in the hospitl..he had the Glenn and TAPV repair done..he did have one scary moment when his O2 stats dropped to the low 40's but it was determined it was just his heart working things out now after the echo showed his heart look good just the function was down and the chest x-ray showed wet lungs...they came right back up after 20 mins or so and no problems since..it was defently scary to sit there and then see all the nurses adn doctors in the PICU run to your baby and hollar for tests and the cardiologist to come stat...I was scared thankfully all worked out in the end...kayden is now 13 months old and as of March 9th is 19.5lbs and has always followed the 3rd percentile he is small for his age but other then that is doing very well..he is full of energy, came off baby food at 10 months old and started eating the foods we eat..he is now seeing the cardiologist every 6 months and will have surgery when he is 3 -3 1/2 yrs old..he is a happy little guy and to look and watch him you would never know he had suck a complex heart problem!

Julia - posted on 07/10/2009

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My daughter was born with double outlet right ventricle, AVSD, and situs inversus. She managed to skip her 'first' surgery, she was so healthy - and also growing and fat! - and didn't have anything until the Glenn at 5 months (her sats were starting to drop by then). She has always been big and healthy looking - when we went for her pre-op stuff before her Glenn, everyone who saw her said 'This is not what our cardiac babies normally look like!' She had her Fontan completion at 2 1/2, she is now almost 4 1/2 and is doing great - we are down to annual cardiologist visits!

Chanel - posted on 06/17/2009

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my little one is now 7 months 2v weeks he just had his 2nd surgery last week. all went well...and he is doing great

Jen - posted on 06/03/2009

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he is 4 months old now and we found out at my 20 weeks ultrasound that he had all this...the name for this condition is : Right Atrial Isomerism

Jen - posted on 06/03/2009

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our boys sound alot alike...my son has double outlet right ventricle, unbalanced AVSD..pulmonary stenosis...TAPVD and dextrocardia...my baby hasn't had anything done yet because he is doing so well but will be having a cath next week and surgery in July..they were going to do surgery when he was born but he was doing so well we got to go home so instead of 3 surgeries he will have 2..they are doing 2 surgeries in 1 !

Lisa - posted on 05/16/2009

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hi i was born with a VSD ,Dexro cardia,Situs Inversus,Pulmanary Stenosis that woz 42 years ago, i`ve had a few surgeries but nothing major and i`ve beaten the odds and gone on to have 6 children, hope this gives you some hope for your son x

Julie - posted on 04/09/2009

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hi my son was diagnosed with pulmonary stenosis and vsds at a day old and had his first op at 4wks old.He is now ten years old with many an op behind him ,altho its not the end of the road as were preparing for another.If i can give any advice or support to anyone going thro simmular situations id be more than happy.

Pamela - posted on 04/07/2009

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My son has Hypoplastic Right Ventricle, VSD. He hsa had 2 of the 3 surgeries. he is 21 months old. He strong and acts like a normal child. I must say it was a long hard road getting here. He has his first surgery at 5 days old, second surgery at 5months old and 2 catherizations. He was a bit delayed as far as rolling over, crawling and walking but has since caught up. I know what both of you are going through. Our babies are so strong and so are you! If you need to talk or ask questions I'm all ears!

I hope both your babies are doing well.

Heart Hugs, Pamela

Chanel - posted on 03/23/2009

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Well I must say I have quite a bit a bit of confidence in the staff over there at childrens, the care my son recieved was excellent. He has had a catherization and as I said his first surgery which was the banding of his pulmonary artery. He was always a big baby but he is gaining weight and huge! When do they think they will any surgery? Stay strong I know how you must feel but our babies are strong even in their weakness..my son is doing just fine and I am sure your child will be just fine also!! 8-)

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