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What Is Truncus Arteriosis?

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Truncus arteriosus is a rare congenital heart defect in which the pulmonary and aortic valves fail to separate completely. This lack of separation results in one large artery, instead of two, leaving the heart. Truncus arteriosus also presents with a large ventricular septal defect. Children may also have a malformed thymus gland, which can affect immune response to even the simplest of viruses.

This disorder necessitates early repair because pressure to the lungs is significantly increased by the large ventricular septal defect and the malformation of the valves. Too much blood gets to the lungs, creating high pressure that must be addressed early to avoid permanent damage. Additionally, too little oxygenated blood gets to the body, which can result in failure to thrive, cyanosis or "blue baby", clubbing of the extremities and exhaustion.

Until the 1980s, truncus arteriosus was usually addressed in two surgeries. The first surgery placed a band around the pulmonary valve to reduce blood flow to the lungs. This gave the baby time to grow before repairing the ventricular septal defect, and separating and suturing the pulmonary and aortic arteries.

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However, pulmonary banding is rarely used now, because improvement in surgical techniques and delivery of anesthesia allows for repair soon after a child is born. Single step repair has a high success rate, even when performed on children just a few days old. Further repair may be required to the valves as the child ages. The pulmonary valve is particularly susceptible to becoming leaky over time, and may need replacement. A bovine, porcine or donor valve is used. Valve replacement has a low incidence of risk and is considered as one of the simplest cardiac repairs.

Children with repaired truncus arteriosus require lifetime follow-up by a cardiologist. Usually, after the careful scrutiny during the first few months of a repair, cardiologists see the child once a year. During a regular visit, the cardiologist usually performs an echocardiogram, or sonogram of the heart, to evaluate the repair and to ensure that pulmonary valve leakage is not significant. In some cases, pulmonary valve leakage after a repair must be evaluated via cardiac catheterization. This outpatient procedure is considered minimally invasive and does not require general anesthesia, although some forms of conscious sedation may be used to keep the child comfortable and sleeping throughout.

The child with repaired truncus arteriosus is usually allowed to participate in normal activities, but the cardiologist may recommend refraining from competitive sports, particularly as the child ages. Children may also be on low dose aspirin to prevent blood clots that could lead to stroke. Most cardiologists also recommend prophylactic antibiotics prior to dental exams and procedures.

Truncus arteriosus is a significant and serious set of heart defects. It is sometimes linked to a condition called Di George, which involves other anatomical defects and can complicate health both before and after repair. Children without Di George are generally expected to have normal life expectancy and quality of life.

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anon969902
Post 39

My three month old baby suffers with the problem of RHS Hydrophnosis and type 2 truncus arteriosus. now the doctors say he must have surgery. Should I agree to surgery? Will my little baby survive this?

anon943493
Post 36

I am a 34 year old male with truncus. I was diagnosed at the age of 11 months and have never had any surgery. I have been for regular check ups at the doctor and only recently started having any real issues. I never had a "normal" life in the sense that I never did any physical duties and I got tired a lot. Other than that, I have had a pretty good normal life and have been married for two years now.

It's difficult to find information on adults living with untreated truncus, so I just want people to know that God is always in control.

anon344108
Post 35

I am 20 years old and was born with TA. I had open heart surgery at 10 days old and again at 13 years old. They said that was one of the longest lasting conduits they have ever had at the Melbourne Royal Children's Hospital in Australia. I still currently have only had two surgeries and may be due in the future to get a third. I keep very fit, healthy and eat well. I have represented my country in softball and I play a lot of sports.

I have never had any problems other then shortness of breath. There are no barriers and no difference between the life I live and that of a normal person!

anon340497
Post 34

My son has Type 2 Truncus. He had his first surgery when he was two months olde and had a revision of the conduit when he was 4 1/2 years old. Then, when he was six years old he had a stent procedure. Again at the age of 8 he had his third surgery. Now he is having his forth revision of the conduit this month. He is normal and studying well. He does all normal activities and he is 17 years old now. I hope after his forth surgery also, he will be as good as he is now. Please pray for my son for a fast recovery.

anon337907
Post 33

My granddaughter was born April 2013 and was diagnosed with truncus arteriosus type 1. She's in the Philippines and we want her to have surgery in the U.S., as in the Philippines our facilities are not complete but our problem is how can we get her to the U.S.? We lack financial support. If anyone could give us ideas and support for my granddaughter to have surgery in the U.S., we will really be happy and count it as a blessing.

anon330969
Post 32

My son has truncus arterious going on six months. Can anyone tell me how long he will be survive?

PDubs10612
Post 31

I was born with Truncus Arteriosis in 1983. I had open heart surgery as a baby at Toronto Sick Kids (Canada) and after the initial surgery my mother was told I was the first of 10 children my cardiologist had sent with this condition to have surgery that had survived. I had open heart surgery again at five years old as the valve was leaking a lot. I was told they would have to replace it again in five to 10 years (at 10-15 years old). They monitored me closely and I have checkups every year, but everything was holding very well.

I am now 29 and just got confirmation that they will do a Percutaneous valve replacement (replacement via

catheter in the groin). The main reason they have decided to do the procedure is because my husband and I would like to have children and the carrying of children will be safer with regular oxygenated blood in my body.

Over the past 29 years, I have not been on any medication and have no physical restrictions other than the ones I put on myself by being slightly overweight. I hope this information helps some new parents out there have hope that you can lead a full life even being born with this condition. I am interested if there are other survivors around my age, especially if they are trying to conceive or have had children.

anon314479
Post 30

My son has truncus type 1 problem and other complications are there and he is now in the third month of it. The doctors said how long he lives is up to God. I want to know that how many months he might live.

rodeen
Post 29

My daughter was born on the 2nd September with truncus type 2 and an Interrupted Aortic Arch, and VSD. She was transferred to Great Ormond street hospital, had an open heart surgery on the 11th September and the operation was a success.

She is now living a normal life. She soon needs to undergo another surgery to have her conduit replaced, but I'm sure she will do fine. I'm looking forward to see her grow and live a normal life. Miracles do happen because they said she was going to die two days after birth, but now, thank God, she is here and so special to us.

My concern is only one question: how long do people with such a condition normally live?

anon281406
Post 28

My nine year old daughter has Truncus Arteriosis and diGeorge syndrome. Her first surgery was at five days and her second at eight years. the cardiologist and surgeon told us she was first Truncus patient for them to go from surgery at birth to 8 without intervention in between. They've also said her life expectancy is 50's to 60's.

DGutz01
Post 27

My grandson was born last month with truncus arteriosus type 4 and an interrupted aortic arch. I cannot find any survival rate information for him. Are there any adult survivors born with the condition?

Are there any parents on this board with a TA4 with IAA child?

anon252765
Post 26

@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.

anon246571
Post 25

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.

newyearseenu
Post 24

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.

anon166916
Post 22

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

anon158295
Post 21

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!

kaden1968
Post 20

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!

anon133305
Post 19

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.

anon125346
Post 18

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

anon122676
Post 17

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.

anon120300
Post 16

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?

anon118517
Post 15

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.

anon116048
Post 14

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.

anon107051
Post 13

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.

anon96319
Post 12

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.

anon95757
Post 11

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.

Tikyjadobe
Post 10

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?

anon65567
Post 8

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.

anon64751
Post 7

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.

anon62071
Post 6

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!

anon52830
Post 5

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.

anon46086
Post 4

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.

anon35411
Post 3

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.

Stateparole
Post 2

Does anyone know if there are any long term studies on Truncus? I'm a 31 year 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.

bass52241
Post 1

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.

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