@anon65567: My son will be six in April. He was diagnosed with Truncus Arteriosus,VSD, Aortic Valve leak at four days old. He was hospitalized that day. In fact, he had an episode when his heart rate exceeded 230 beats per minute and he was placed in ICU. He underwent open heart surgery at 11 days old. He didn't have DiGeorge Syndrome.

He did very well. At first we were given only a 15 percent chance of coming out of surgery, which was devastating. He had stents put in both pulmonary arteries at 2 months of age. His first valve he received was from a human donor. He had his second surgery in February 2012. They replaced his 8mm conduit with a 22mm (adult size) pig conduit, and repaired his aortic valve instead of replacing it. The aortic valve has three flaps in a normal heart. He had four.

Three days later, I was informed they had to go back in since the repair wasn't holding. Four days later we were home.

So far, so good, and we are expecting at least 7 to 11 years before his next surgery. All my advice for you is to be strong, pray, and keep your faith. This has been the most painful and devastating experience I've ever had to face and it isn't over yet. Infants are very resilient and can endure more than you think.

Mentally try to prepare yourself for the visit after the surgery. He had four chest tubes, a catheter and many IVs and other lines. Good luck to you and your grandchild.

I am currently 21 weeks pregnant and found out last week that our baby has truncus as well as a leaky aorta valve. We have been given 60/40 odds that he will survive surgery, however the doctors only estimate life expectancy to be mid 20's to 40's maybe.

My initial thoughts were to continue with the pregnancy if no chromosomal abnormalities are found, but after having been told he may only live to his 20's, we're having second thoughts.

This is our second baby with truncus. We said goodbye to another little boy last year. He also had a diaphragmatic hernia which affected his chances of survival dramatically. We also have a healthy two year old girl.

Can the adult survivors out there give me some insight please? Do you have any idea what your life expectancy might be? I live in Australia.

I have been reading posts by people whose kids have diagnosed for TA and have had surgery for the same. However, I have never come across a post which says about a baby who has not had surgical intervention.

Many parents who are aware of the TA condition of their baby might also be thinking of how long their baby is going to survive if not operated on for TA.

This is my personal experience with my baby daughter who was diagnosed for TA(1) and also associated with other medical complications of missing LPA, regurgitation, valve dysfunction, etc. However, on a lighter note our doctor, who is a very close relative of ours suggested it was better not to operate on her for the condition as you will have to keep dealing with her for her lifetime, and you need to take extra precautions with her physical activities and health conditions which might add up to the existing TA.

Though it was so hard to decide on, we decided not to operate on her. She survived for seven months and she left us forever in My 2011. Having lived with her for just seven months, she has been attached to us so much that is really hard to even imagine how people cope with the situation when the problem complicates at ages of 17 and older. Because my baby was given an expected survival age of 17-18 years provided the operation and other surgeries happened successfully without any complications.

For parents or doctors who have experience with TA, can you please clarify a few doubts for me:

1. What is the possible earliest time when you can find out your baby is having TA?

2. What is the survival rate for people with TA ? I mean, what is the average life span? I was really glad to read a post by someone who is aged 16 and is pregnant. Hope both mom and baby are doing good.

3. If I had a baby with TA, what are the chances for TA to repeat in my future pregnancies? Provided my partner and I are genetically doing good (we've had genetic tests done). Is there any such rule that defines the possibilities of TA in a couple, or it just too random to predict who's next ?

I would thank everyone for the support and any additional information posted. It helps every parent who unfortunately is looking out for information regarding TA.

It's great to hear such great outcomes. My son was diagnosed with Truncus at three days old and had surgery when he was four weeks old.

The repair was successful, but there were additional complications including his bladder being perforated during surgery and he required dialysis. He also died the day after his surgery and would have been 16 today. I miss him very much. --DMC

my seven old daughter has TA(1). Her first surgery was at five days and she has had no other treatment since. She is doing brilliantly, with some breathlessness and palpitations. Doesn't affect her ballet though!

my son is almost four and has two open heart surgeries for Truncus type 2. He is doing great! he seems to have more energy than our whole family. you would never know he has a heart condition. He does not have De George but was born with a cranial problem that needed surgery, has hypothyroidism, and they say he does not have a thymus gland, but you would still not know that he has anything wrong with him!

My daughter was born two years ago with TA type 2 and VSD. she had surgery at eight months, and was a miracle. she is is two years now and due for her first cath in two weeks time, though the doctor said there maybe a need for conduit replacement in future. With comments i have read i believe God that she will pull through and live a healthy life as i desire for her.

I am 27 years old and was born with TA Type 1, Interrupted Aortic Arch, and VSD. I have had four open heart surgeries and only two or three caths. I also was trying to find information regarding older adults with truncus and life expectancies. i would love to find a way to chat with you all. --Lauren

we are considering an adoption of a little boy with truncus arteriosus persistens. Big question: he is 6 1/2 years old and has had no repair. He has an enlarged heart and VSD. What I am reading makes me think that no one would live to be six years old without having a repair done. Any thoughts? They say that he is active, and he looks healthy.

My daughter was born in Dec. 2008 with truncus and has had two open heart surgeries at five days after birth and five months after birth, then one stomach surgery(obstruction) at seven months old, a cardiac catheterization at 22 months and maybe another open heart coming soon. I'm so afraid and don't know why my little angel has to suffer so much?

I am also 32 years old and have had four surgeries and a stent placement. I have also been looking for long term studies as I am at a point where they are looking for options to not do a fifth surgery.

I have been told that a heart transplant may be my next option as I am now allergic to aprotonin (the medicine used when switching to the heart/lung machine). Any thoughts? Would love to connect with others.

My daughter was born three months premature three weeks ago. She is growth restricted and was only 1lb 6 grams at birth. She has been diagnosed with TA type 2 and will be getting surgery as soon as she hits 2 kilos. So we are happy she has fought this hard and continues to fight. But i did not see anyone with a similar situation to ours posting on here.

It would seem most babies have received this surgery in the very early neonatal stage. Has anyone had a child who was clinically (grown) for an extended period of time? I would love to hear from you. Thanks.

hello am 16 years old and live in england, i have truncus arteriosus- type 1. i have had three surgeries re-placing my conduit. i am 17 weeks pregnant and looking forward to the birth of my child. the doctors say that being pregnant won't complicate my heart condition, although there are a lot of specialists arguing over who gets to look after me.

Is there anyone else out there who is pregnant with truncus arteriosus type 1? would love to know.

It is so nice to hear such positive comments from truncus surgery. My daughter was diagnosed at birth and had surgery at five weeks old.

We thought she was due for surgery this year, but recently had a stent placed. This lowered the pressures back to where they were after her first surgery.

We may be looking at one to three more years before the next surgery. Soon to be celebrating her second birthday and you would never know there is anything wrong. (Just a little peanut!) Good luck to those of you with upcoming surgery. Will keep you in my thoughts and prayers.

I am 23 years old and I have had four open heart surgeries at nine weeks, 1-1/2years, 13 years and 17 years. When I was 20 I needed another heart surgery but I was eligible for a trial procedure that was only available in three hospitals in the u.s., so I have been going back and forth to miami (17 hours away from home) for the last three years, but so far it is great and it wasn't open-heart.

I'm 30 weeks pregnant and found out five weeks ago that my baby has truncus arteriosis as well as kidney problems and my baby is very small. can anyone give me some advice, please?

My granddaughter was just diagnosed with Truncus Arteriosus, she is expected to be born May 28. We are very new to this disease and would appreciate any feedback on people who have been through this.

My daughter has Truncus Arteriosus type 2 and a heart murmur and Rubinstein Taybi. She had her first conduit(from a deceased baby) fitted at 10 days old and her second at five years old. she is now 16 and is doing well though she will need more surgery in the future. She wasn't expected to make it, but to me she's my miracle.

My son was born Jan '07 with type 2 Truncus. He had surgery at two weeks old and again in November of the same year, to construct a larger conduit. He is doing wonderful. He seems full of energy and you would never know he has been through two open heart surgeries!

My daughter was born in November 1998. We thought she was healthy but at three days old doctors discovered a heart murmur.

She was admitted to Great Ormond Street Hospital where they diagnosed truncus arteriosus. As she failed to thrive surgeons operated at 10 days old. She survived the operation but died the next day.

We always wonder why she died when others survived and lead active lives. We miss her and think of her every day.

My daughter was born jan 2008 with truncus and digeorge. She spent the first five months of her life in icu with various complications that followed after her surgery and was finally discharged from hospital at six months of age. Currently she is doing fantastic and has hit all her milestones other than her speech is slow.

I am 32 years old and have truncus arteriosus. I have had 3 surgeries to repair. I have a donor valve and an artificial conduit. Stateparole, you probly won't find much about longterm outcomes because when my surgery was done in 1978 there was only a 10 percent survival rate. Put simply: they don't know beyond 33-35 years of age.

Does anyone know if there are any long term studies on Truncus? I'm a 31 yr old that has had 5 truncus repair surgeries, have a pigs valve and artificial conduit. Having probs locating anything on the long term outcomes. I am currently a parole officer and live a very physically active life.

My son was born 2 1/2 years ago with type 2 Truncus. He had surgery at birth and then had a Bovine conduit replacement at 2 1/2. He is doing great and is thriving better than most ever thought possible.