Transposition of the Great Arteries

Robin - posted on 12/31/2008 ( 60 moms have responded )

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My son was born with transposition - meaning his left and right great arteries were switched. He had surgery at 5 days old and has been doing great since. He is now 5 and you would never know that he had such a rough start. He just had his first CAT scan to check things out (he has had yearly echos until this year). Everything looked great! Anyone else have a similar story? I'm interested in how other children, especially at various ages, are doing.

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Shauna - posted on 09/29/2013

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Hi, I am Shauna I had TGA in 1977 I am 37 years old and have a 11 year old daughter I have gone thru a few hiccups also. I would love to communicate with you.

Angela - posted on 04/30/2013

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My sons name is Kasan. He was born in 1998 with TGA. He wasn't diagnosed until 6 weeks old. At 3 mos he had his 1st open heart surgery at Cincinnati Children's. They repaired a VSD, ASD, and did a coarctation. When he was 6 he went into complete heart block & had a permanent pacemaker put in. We were recently hospitalized at Cincinnati Children's for 23 days where they attempted to repair his tricuspid valve... (Which wasn't successful) & he had a new biventricular pacemaker put in. He's always been very active & plays soccer year round.... In May we are traveling to Boston for a pulmonary banding...he'll be banded for 6 mos, and then the Arterial Switch 6 mos later. Our cardiologist in Cincinnati doesn't seem very optimistic about a child his age getting an Arterial Switch (he's 15)... Boston seems more optimistic... Does anyone know of a child who underwent the switch later in life & what the outcome was... All the literature I've come across is in baby's.... Please get ahold of me & let me know... I would love to hear from those patients or other moms!! Thank you!

Janet - posted on 01/05/2013

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We have the same developmental issues with my neice who is 7 she also had the arterial swithch when she was 2 weeks old

Robin - posted on 09/07/2012

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Hi! I'm now 23 weeks pregnant with my first baby, a girl. at my last ultrasound at 22 weeks, the doctors said they think they see the 2 major vessels in the heart switched. They aren't sure and said they really can't see because the baby keeps burying herself down in my hips. I'm so worried about my baby dying, but I keep getting the idea from all I've read about TGA so far that it is very survivable. It broke my heart going to register yesterday and not being able to register for a newborn sized pram to take home my little girl in. The doctors aren't sure yet. I'm still waiting on a fetal echo, but I feel i have to emotionally prepare for things to not go according to plan. I'm so afraid of losing my baby.

Elisha - posted on 05/24/2013

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My daughter is 8 weeks old, she is a TGA baby. She underwent a balloon septostomy at approx 12 hours old and open heart surgery at 6 days old at the Royal Childrens Hospital in Melbourne Australia. Since being home she has done brilliantly. She is feeding well and putting on weight, we are getting lots of smiles (very happy girl) and at 7.5 weeks she even started rolling over. Her Health Nurse is very happy with her progress you would never know she had a rough start until you see her scar.

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Kristi - posted on 04/09/2014

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My son had his surgery at Cooks too. He is 14 now and plays everything but footbALL-no heavy weightlifting either. He is doing great. Why is your son only allowed to play baseball?

Felle - posted on 03/19/2014

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Good day!

I would like to introduce myself, I am Felle Angelee Lizbeth Diaz-Perez. I would like to refer to you what happened to my first born. She was diagnosed to have Congenital Heart Defects: Transposition of the Great Arteries, Ventricular Septal Defect, Patent Ductus Arteriosus and 1 Coronary Artery. In fact, she was already operated last November 28, 2013 at Philippine Heart Center. On January 2, 2014, she underwent Plication of Diaphragm due to diaphragmatic paralysis. On February 17, 2014, she underwent Tracheostomy due to repeated intubation (9x). Until now we are still here at the Philippine Heart Center and my baby is still connected to Mechanical Ventilator. Her weight now is only 3kgs at 5months old. I would like to seek assistance, I really want to save my daughter's life. Please help us call the attention of the specialists abroad. She might get better if all the necessary equipment will be available for her immediate recovery. My daughter, Sarah Angelee Diaz Perez is fighting bravely in this battle. She is now 5 months old. Please help us save her life.

I have been looking for TGA+VSD group. I am still uncertain but I know my baby, Sarah Angelee Perez, will survive this. Please help us pray for her complete healing and immediate recovery. And I need a support group. Please be with me in this journey.

I hope we can find good Samaritans to help us in any way they can as we have already exhausted our resources to settle our bill which has already ballooned to an amount we couldn't settle at the moment.

I hope this will touch your kind hearts. Thank you very much! God bless you more!

Sincerely yours,

Felle Diaz-Perez

Contact numbers: 09227841825/09065530751

Email address:
felle_diaz@yahoo.com
sarahangeleeperez@yahoo.com

http://sarahangeleeperez.wordpress.com/2...

Kayla - posted on 01/02/2014

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I'm so excited to find this group! My son Cason was born 2009 with TGA. He had the switch at 4 days old at Cook Childrens in Ft Worth, TX. He has been doing great since and has seen a dr yearly for checks. The dr told us this last visit that he did have 5% blockage but did not suggest any panicking. The dr only allowed us to play baseball and said that was most likely the only sport allowed in his future. I am thankful he is my "thinker" child and finds more fun in science.
I have found a few other moms over the years. One mom with a story just like mine, lost her husband in his sleep a few weeks ago. Dr said he has heart failure! He always took care of himself since his son had TGA. They say this is not genetic but this hit a little too close to my heart to bog cause worry. My husband and I have recently completed our yearly EKG. Anyone else link TGA to family history?

Marlene - posted on 12/28/2013

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I'm here not because I have a son with this condition. I'm here just to share my life a little of it. My husband was born with TGV and he never went into surgery for it in fact he is almost 34years old and doing great. Doctors tjis day said that pretty much they have never know anybody his age that have live with TGV without surgery at this point. THAT HE IS A MIRACLE WALKING TO THIS DAY see when I meet my husband he wasn't doing all that but he was ok. We found God and he got better...he takes pills to keep his blood running smooth but other then that he is fine. We have 3 kids together and very happy.If anybody there who knows somebody with his condition I will be glas to know about it...thanks

Jamilla - posted on 11/19/2013

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I was born in 1980 with TGA, VSD, heart block, septal defects ect... I had the switch operation at 20 years old and had my daughter at 24! She is now 9 almost 10! I'm so greatful to be with her!! :) iv had rough times as we all do however overall I have been very lucky considering 2 endocarditis episode leaving scaring on the heart. I have diffibrlator! Thank god it's never fired in the 7 years iv had it . Pacemaker before that! I upgraded! I think that a positive attitude and keeping your mind balanced with deep breathing, meditation and understanding your heart and lungs is your power to your own coping with your or your child's TGA! I have my mitral valve change soon and im sure il rock thro that too! Have hope fellow TGA patients and parents!

Shauna - posted on 09/29/2013

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Hi my name is Shauna I had TGA 1977 I am 37 years old. I have had a few procedures at 21 I had pacemaker and ablations. I went into congestive heart failure twice and had a ballon pull and another ablation at MUSC..,.. Now the good news my daughter is 11 years old and perfectly heathy. I was consider High Risk Pregancy I was put to sleep they only had a short time and I had a c-section. This was after all produces I listed above. I went into Thrid Stage Heart Block was very tired but she worth it. I also had a full time job at that time I am doing ok now very hard to juggle a child, job, and keeping my self heathy. They said no more kids so during the csection they cut and tied my tubes however my miracle is 11 years old no problems. I have recently quit my job so I can take care of my family
I am having a little narrowing in the bifle and it has a small leak maybe another ballon we will see soon. Please keep in touch. I want to say you will be ok. You can have a child.

Amy - posted on 09/24/2013

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I have TGA I had mine done in 1982 and I'm 31 years old I had 3 surgeries and I'm going great. I found out that I'm 6 weeks pregnant and very worried about my heart and my baby. So I have to go back to Emery in Atlanta for check ups and testes. Is there anybody out there that's has the same thing as me and pregnant?

Renee - posted on 09/09/2013

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Robin- sounds very much like my daughters story who lost her baby boy this Feb.- he only lived 51/2 hours- he did not have the "hole" either. I know that it was VERY hard for her to research TGA and read how the survival rate is so high and yet HER baby had not. I'm so sorry and wanted you to know that YOU are not alone in your loss- there are other people greiving along with you- wish I could find a support group for parents who did not service TGA!

Laura - posted on 04/29/2013

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I was born with transposition in 1987. It was just the switch; I didn't have a hole in my heart, as many babies do with this condition. I was considered to be perfectly healthy at first. Luckily, an observant nurse happened to notice that my feet were turning blue, and that is how it was discovered that i had the condition. I was taken to Children's Hospital in Boston, for my surgery, at 3 days old. At the time, in Boston, the hospital had recently perfected the newer surgery that they still do today. I was part of the original research, and I send in information on how I'm doing to this study yearly. I'm sure it was a scary time for my parents, but I obviously don't remember a thing. I've been very lucky and I've lived a completely normal life, without a problem since! I have a slight heart murmur and a slow average heart rate ( but that might just be genetic, I don't notice it). I'm now nearly 26, I've finished college, I work with kids every day, and got married a little over a year ago. My mom always says she is really glad she only had one ultra sound and didn't know I had the condition until I was born. It would have caused a lot of worry, and I ended up just fine!

Kelly - posted on 03/12/2013

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has anyone been told there unborn baby as transsposition of the great arteries and turned out the baby didnt

Angelea - posted on 02/03/2013

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My son is 22 and had a complete arterial switch (Jatene) proc at 9 days old. He is almost a second degree Blackbelt Martial Arts and an instructor of Tang soo Do you can reach me at my email ang.henschel@ymail.com He is the second oldest living Jatene proc child .

Rayne - posted on 01/25/2013

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Shelby Smith... My grandson developed severe pulmonary stenosis from his arterial switch. we just had second surgery they put a patch on the pulmonary artery so they could balloon it later in life if they needed to. Which he will have to have done because it did not completely fix the narrowing. so did your daughter have stents put in before the patch or patch after the stents? I'm happy to hear that she is a 20 year old healthy Woman. Btw I am referring to my grandson Evan. We did not find out he had a heart defect until 24 hours after birth he was flown to Children's Mercy in Kansas City we found out he had TGA. He had his arterial switch done at 2weeks old then developed severe pulmonary stenosis which they say is rare after an arterial switch... they tried ballooning the pulmonary artery at 5 month old. it did not work so he just had a pulmonary patch... 7 days ago. he is 8 month old right now and you can't even tell he just had another open heart surgery he is all over the place. Anyone out there with any info about TGA with an arterial switch operation and then developing severe pulmonary stenosis to the point of surgery with the patch please let me know. Sorry so long I was just asking a question and it turned into a mission to find out all I can because of it being so rare..as Dr told us. Thanks so Mich dazgoby@gmail.com

Shelby - posted on 01/03/2013

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Hi everyone
My daughter is 20 she was born with TGA in 1992, she had her switch at 5 days old. She has done great! She had to have one other open heart just to patch the stents in her pulmonary artery but was out if the hospital within 4 days .... She had her surgeries at Yale in Ct.
Shelby

Crystal - posted on 10/08/2012

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I went through the same thing my son had his open heart surgery at 6 days old. He did amazing and was out of the hospital by March 28th 2009 (he was born on March 10,2009. He is now 3 and his motor skills are a littel behind and he just recently started talking. He talks alot now he is taking speech therapy and occupational therapy! He is a very fussy baby but I think thats just him with or without the surgery! He's doing great!

Robin - posted on 09/14/2012

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we just got our third level 2 ultrasound on 9/13/12 and they sent us home with good news. everything looked completely normal. its good to know, that even if baby had transposition, there could be operations to fix it. I will probably always have in the back of my mind that doctors thought they saw something, so what if something really isn't right with baby's heart. I'll have a grown child and be sending reminders to take care of her heart.

Robin - posted on 09/14/2012

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Hello Robin,



I was born in 1976 with TGA.. Had a few hiccups here and there. But for the most part I'm good. I have a nine year old daughter who is the love of my life. It would be great to communicate with you sometime.



Robin R. (Van Alstyne, TX)

robin.krantz76@gmail.com

Robin - posted on 09/07/2012

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If anyone has any advice, you can just post a reply or email me at RobinTMcCarthy@yahoo.com

Nicole - posted on 08/22/2012

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Well, my families situation is a lot different with a tragic outcome. My brother and sister in law had my nephew at term. As soon as the cord was cut, my nephews 02 level dropped. The obgyn contacted the closest tertiary care hospital to speak with a pediatric cardiologist. It was confirmed, TGA. They helicopter flew him to the hospital and he did not survive. To say we are all devastated is an understatement. The next day, the obgyn who delivered, who actually never met my sister in law during her pregnancy had some news. She reviewed the chart . A level 2 ultrasound was ordered and was not done. She had a level 1 ultrasound . In the state they live in a level 1 is standard and a level 2 is ordered for different reasons, hers being that she is over 35. So, the ultrasound tech and dr who signed off on the incorrect ultrasound results are at fault. If my brother and sister in law were aware of TGA, he would have been delivered at a specialty hospital. Does anyone know of any similar situations? It took 2 hrs from the time he was born to get airlifted and he did not make it. I believe in reading info it is likely that he did not have a "hole" in his heart (there is a medical term) which was to his detriment. If he had this, he would have survived the 2 hrs until he could get the balloon procedure. So incredibly devastating.

Sue - posted on 04/11/2011

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nathanial was born with TGA/VSD/ASD/PFO and had his open heart at Boston Children's at 3 days old.he's been great since than..sick a lot, especially in winter. He has some regurgitation/dilatation and conduction issues but nothing that slows him down! He now has a hernia (either from his chest tube, or from birth..not sure which yet) that will probably need surgery to fix, but what a ball of fire : )!

Andrea - posted on 02/17/2011

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my son Ayvin was was born with transposition too except we didnt know until he was a month old we went in for his one month visit and were rushed about an hour away from home so he could have his "switch" done at a bigger hospital than the one we have in town..He just turned 2 months old today and we got home about a week ago and everythings going great! were so happy hes still with us because we were told had we waited one more day we would've lost him..

Kari - posted on 01/29/2011

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My son is a transposition too! He's almost 11 months old now, and he's onto cardio visits every 6 months. He had a lot of complications due to developing DIC after surgery, You would never know by looking at him that he's a heart-kid.

Jensie - posted on 06/08/2010

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My son Gavin was diagnosed at about an hour old. He was flown to NH (I gave birth in VT) then 10 hours later flown to Boston Mass. He had hypertention so he didn't have the switch operation until 6 days old. He has been doing great ever since. He turns 3 Aug 24th. We go to the cardiologist one time a year right now. Gavin has moderate scar tissue inside the aorta and slight leakage also. He also has VSD, but we dont worry about it unless his body ever shows signs it cant handle it. other than that my baby is getting big and smart. he has no restrictions. he is smaller than a lot of kids his age, not sure if thats genetics or from the surgery.........

Bonnie - posted on 05/21/2010

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Wow, it's heart warming to hear all your success stories with children born with TGA. My son, Marshall, was born Halloween day via C-section after a very high-risk pregnancy. We found out within a couple of hours that he had TGA and would require surgery. He was transported from Lansing to Detroit, Michigan at 7 hours old via ambulance and had his surgery at 6 days. He was released from the hospital after a week with no complications at all. We have been very blessed that he is a healthy 18 month old child with a zest for life. Our only issue has been his gross motor development has been on the slow side of normal due mainly to his size. He is off the charts for both height and weight at 34 pounds and 36 inches tall at his 18 month check up. Thank you all for sharing your stories. It gives me hope that Marshall will be able to grow up with a normal childhood and live a healthy life as an adult.

Shaz - posted on 04/09/2010

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hi robin , my name is sharon , im 30 yrs old , i live in the uk , i was born with tga , transposistions of the great arterys too , wen i was a baby . i was very poorly n the doctors , said at one time to my parents that i wudnt make it through the night , so i had a vicar come n bless me whilst i was in my tiny cot , but despite docs , i was a fighter , n shined through like the brighest star! x since then ive undergone more major surgerys , n minor ones , had , pacemakers , n lately a I.C.D. implanted to help with the odd day , apart from all that i live a relatively normal life xxxxxxx

Ritu - posted on 01/02/2010

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My 9 year old was born with TGA (surgery performed 2 days after she was born) - it is very comforting to know that we are not the only family out there with this story. I am happy to report that she is a very smart, strong young lady now.

Mandy - posted on 08/31/2009

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hi my names mandy and i have a little girl megan who was born in march 2007 with tga she is now 2 and a half. we did not know until after she was born that she had tga.she was on the ventilator for 3 weeks on and off and she arrested after her switch op.we got told in january this year that she may have c.p because of the lack of oxegen at birth we have had 2 consultans tell us this and a leg speclist as she as problems when she walks to do with the musals in her legs and feet and the physio as also told us aswell.we went in june this yeae to see the consulant about her heart and he said she as a kink in her pulomy vavle to her lungs so we have to make sure she does not get out of breath and that she rests also.megan as glu ear and as mild to modurate hearing loss she as hearing aides as the don't want to op on her because of her heart.she also as speach and development delay's also.the heart consultant does not want to see her for a year as long as we keep a close eye on her he's not bothered. we have had to fight to get megan all the help she needs and were luckie tat we have help from the kid's charity as the asinged her a case worker and she is great that she will help with all the forms and appointments megan needs.we have had a struggle but hopefully with her now getting the support she need's she will go to the main stream school we know she will need help with her speach and other things at school when she goes.and we have been told she will have another op but we hope it will be later so she can build up her strenght.but i know it can be difficult when people say oh no your child is fine there's nothing wrong.but i new their was something wrong with megan and kept tellingf the doctor's that they was.now she's on another waiting list to see someone at hospital about her legs and feet.but i'm just gladd she 's her today with us and we are so lucky i would not change a thing she is such a lovely little girl and always wake's with a smile on her face.i hope all goes well for your little one.

Stacey - posted on 08/19/2009

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I just wanted to share a note to let you know that all things are possible... I am a 31 year old Mommy to 2 kids. I HAD transpositon of the great arteries when i was born in 1977...I know the surgery they do know is way more simple than the one I had but it goes to show you how wonderful modern medicine is....
I have lead a very normal lifestyle and have had 2 kids (just with the help of an epidural) and everything went great. I wish you the best of luck with your son!!!
Heart Defects were a huge concern of mine while i was pregnant since I had a 10% increased risk of havving a CHD baby!
Take Care
Stacey

Sheila - posted on 08/13/2009

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My daughter is 6 yrs old she was born with transpostion of the great arties and asd and vsd.her surgery was done at 4 days old .she is doing wonderful,they recently put her back on a heart med cause when she had her surgery she had a small rupture that they moreless thought it would close on its own but it hasnt and if med doesn;t work were are looking at another open heart surgery in a year.

Katy - posted on 06/30/2009

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My son was born with LTGA (congenitally corrected transposition), he has pulmonary stenosis and a large VSD as well as ebsteins anomaly. He hasn't had surgery yet, and he's 5, so far so good. Our Ped Card said that kids born with this type of CHD they can go decades or days without surgery, it's all a wait and see. But at 5, my little man is on his meds (enalapril, lasix, and digoxin) and doing wonderfully. He's a very active little guy, he knows somethings different about his heart, he can feel it. He asks when he can stop taking his medicine, and I have to tell him he can't, and he tells me that God is fixing his heart. It's heartbreaking sometimes, to watch him slow down and not be able to keep up with other kids his age, but.... I remind myself everyday with him is a gift from God, because there are many other parents who haven't been as blessed as us to be able to have their heart babies with them like me.

Carol - posted on 06/19/2009

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Michelle, my daughter also has pulmonary stenosis with her TGA (along with multiple VSD's). Is the next surgery for your son to replace the artificial valve? How long do they tell you the valve will last? Our doctors have not said anything about replacing my daughter's pulmonary valve but I know it might be something that needs surgery in the future.

Amy - posted on 06/19/2009

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My son was born in 2003 with Transposition. He will be 6 this year and is going into kindergarten. Health wise it was a rocky start but, he is doing great nowadays. Physically he has some learning disabilities, due to being oxygen deprived for the first 10 days of his life. At his last checkup in Feb. we were told he may have to have surgery again because his chest is sinking. He also has a small leak at the sight of the surgery but, they say that is normal. He is an extremely active kid, lots of friends, plenty of fighting with his 2 older siblings, and tries hard at everything he does. I also have a cousin who was born with Transposition. He is 15. I don't hardly see him but, I know that he is doing well and doesn't like to do strenuous activities (sports). It's so nice to hear that there are other kids out there with the same thing who are doing so well. I wish everyone the best with the future.

Michelle - posted on 06/10/2009

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Hi My son is 14.5 now, we are from England and now live in Ft.Myers, Florida. He has his arterial switch op at 7 days old in Birmingham, England and did great, at aged 4, due to complications he had pulmonary steonosis, so had a artificial pulmonic valve fitted and artificial pulmonary artery. Since then he has done great. Surgery perhaps due anytime soon. Probably have to go to Miami or St.Petes for it in Florida. he is very fit, active on no meds and his 5ft 7 and 120 lbs.



How is your son doing now since your last posting.

Kristin - posted on 05/18/2009

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I am new to this group. My son, 9, has corrected TGA. Everything has been good over the years. This past December we were told that he will require an additional surgery to stitch up both his Aorta and Pulmanary arteries. We knew about the Aorta, but the Pulmanary was never mentioned before. The required stitches were to close to a regulatory valve and couldn't be done when he was an infant. No date set yet.



I am wondering if any of you that have kids with TGA/TGV have experienced speech disabilities? My guy was a late talker and still goes thru therapy.

Faye - posted on 05/04/2009

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my son was born in march 2008 with transposition of the great arteries, he wasn't diagnosed until the day after birth, it was picked up because he was so blue, he was rushed by ambulance to the childrens hospital, where he had a balloon septostomy to rip a hole in his heart to keep him alive till he could have the switch operation which he had at 10 days old. he was on baby asprin for 6 months, he also has a leaky valve which they arn't overly concerned about, they are just keeping an eye on him. his next check up is in 3 months but he is a big, bright and very happy little boy, to look at him you would never know he had been so poorly, he just has the scar to show for it, it also makes me feel much happier to see other children who have bin through this who are older than my little boy and to see how happy and well they are.

Tracie - posted on 04/21/2009

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Carol I'm glad your daughter is doing so well. My Arianna is such a blessing. I also look back and wonder how I made it through her surgery and recovery. I can't say enough good things about the doctors and nurses that helped take care of her. Arianna is the most wonderful child, and I can't imagine my life without her.

Carol - posted on 04/18/2009

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Hi! My youngest daughter, Claire, was born with TGA, VSD's, and pulmonary stenosis. We didn't know there was a problem until a couple of hours after birth when she was "blue". She has had 3 surgeries, the last being open heart surgery to do a modified Fontan when she was 8 so her arteries are still switched but her heart seems to function fine. She is now 17. Other then being "blue" because her oxygen levels were in the low 80's and being easily tired, you didn't know there was something seriously wrong with her when she was younger. She wanted to do everything her older siblings did and did not like people to know about her heart and treat her differently. I remember how overwhelming it was when we started with all the cardiology terms,procedures, and trips to and from the hospital and looking at it now from a distance I wonder how we were really able to deal with all of it. I am really grateful for wonderful doctors and nurses who have the patience to explain things over and over and the continual breakthroughs in procedures and equipment.

Sorry this is so long but this is a subject I feel strongly about.

Amy - posted on 03/27/2009

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I had my son in February 2007. We didnt know there was anything wrong with him until he was 16 days old. I mentioned to my Health visitor that he was feeding every 2 hours, was always sleeping and that he was projectile vomiting. She advised i took him to the hospital incase he had a chest infection. Whilst at hospital he was put on 6 different machines as they thought there was something wrong with the equipment they were using. His blood oxygen level was 25. That night they had him in for surgery to rip a hole in his heart so he would survive the night then when he was 4 weeks old he finally had his open heart surgery. We had to wait so long as they needed two sureons to preform the operation as there was a vein where they needed to cut. All went well though. We stayed in hospital with him for 2 months.



 



Hes now 2 and nobody would know there was anything wrong with him if it wasnt for his scar. He has an echo every year and has a slight murmour.



 



We are now expecting our second child and so far nothing has been found on scans.

Tracie - posted on 02/19/2009

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No baby asprin, they just had her on diuretics for 3 months. Now she is off everything, and doesn't go back to see card. until june for another ultrasound. So far she is just like any other 5 month old. The only difference is her scar.

Robin - posted on 02/18/2009

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Malia, my son has a small murmur and has since his surgery.  Our ped card says it is pretty common after TGA surgery.  They continue to monitor it at his yearly appointments and the regular pediatrician follows up on it as well at the well child appoinments.  As for the baby asprin...my son was never on it.  He had blood thinners at the time of his surgery but was done with them a week later when he came home.  He continued to take a diuretic med for a couple weeks after coming home but that was short lived as well.



 



Thank you so much to everyone who has shared a story here.  It is a lonely place to be when you don't know others who are in a similar situation.   It's just nice to hear other success stories and be able to encourage each other! 

Tonia - posted on 02/18/2009

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Trisha, thank you for sharing your story. Our son didn’t end up needing the diaphragm surgery because they determined it was just nicked and not paralyzed. They talked about the surgery but he didn’t end up needing it. He’s had no further complications from that injury and it’s 100% healed. He’s also has no heart problems at all. We just deal with his learning disabilities; which I’ll take any day over not having him. I would just like to have a diagnosis so I can understand and help him more.



Malia, my son was never put on baby aspirin after surgery. However, he was on it for a short time after coming down with Kawasaki Disease (of all my kids the one with heart surgery got this). Also, my friend’s baby who had TGA and has a pacer has the leakage. They are also just monitoring it. If it gets worse they’ll have to do surgery. If it stays the same, they’ll just keep monitoring it.

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I had a question for you moms.......forgot to add.....is anyone still giving their TGA babies "baby asprin" to keep the blood thin? My daughter still takes asprin although I haven't been to her Card Doc. in over 6 months so they may take her off it now. Also....she had a small heart murmur and leakage around the valves that the doc isn't too concerned about. Anyone else with these issues?

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Hi. Had my second daughter on Jan. 8, 2008. We found out when I was 22 weeks pregnant that she had Transposition of the Great Arteries. She had her "switch" at two days old at the Childrens Hospital in Orange, CA and was released 22 days later. She just turned 1 year old and we have yet to have any complications with her heart. She is a healthy happy walking toddler. I'm glad to hear older children with this same heart condition is doing so well!

Trisha - posted on 02/18/2009

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Tonia, my son Ryder also had a diaphragm injury during his open heart surgery. They discovered the problem when they attempted to extubate him. He wasn't breathing good enough on his own. They re-intubated him and ran some tests. They told his diaphragm was paralyzed (I guess it's suppose to compress when you breath so that your lung can expand). So they did another surgery called a diaphragm plication. They stitched the diaphragm down (only on the left side) so that his lungs could expand fully. He was extubated a day or two after that and was ok. I guess he was intubated for around 2 weeks, maybe 2 1/2 (it's hard to remember the specifics). We had to stay at the hospital another week or so while he learned how to eat from a bottle. By 6 mos his ped card told us that his diaphragm was working again but limited of course. I'm sorry your little guy has a tough time. I'm sure that's frustrating for you and him. I just wanted to share our story. I wonder why they didn't do this surgery for your son. But I also wonder why they didn't wait and see if my son's diaphragm would have healed. I don't know which way is better.

Tonia - posted on 02/18/2009

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My son is 6 years old and had TGA. He was diagnosed 4-5 hours after birth, transferred, and had corrective surgery at 7 days old. The surgery lasted about 8 hours and they had a difficult time getting him off of bypass. His chest remained open for 9 days before closing. He had severe Edema and when they finally tried to get him off the vent after six weeks it was discovered his Diaphragm was nicked during surgery and he couldn't breathe on his own. They excercised it for another week and luckily it healed enough and they got him off the vent after 7 weeks. He stayed in PICU until week 8 while we tried to get him to feed before moving out to the floor. Two days later he had three seizures. They couldn't find anything on the CAT scan. We finally went home after 9 weeks; he was on a feeding tube. We were able to get him off 3 days later and off all meds in about 6 months. He also came home with Tortecollis, which we didn't know. His neck was stiff and stuck in wrong direction. So at 5 months he started getting physical therapy. At that time we found out he was developmentally delayed. He has motor planning problems and can't learn new skills like rolling over, crawling, walking, climbing, swinging, riding a bike, and etc. without first being taught the skill over and over. Once he gets it, he's good. He's on an IEP at school and looks like after two years of mainstream will have to be transferred over to the Speical Day Class. He's an amazing child and is very heart healthy. He doesn't fit into any one catergory of disability. He probably has ADD and something else. It's like a little of everything. We honestly think he has a brain injury from either a lack of oxygen from surgery when they couldn't get him off the bypass or from the seizure. It's very difficult to get a doctor to go down that path. We're still working on it. We have yet to meet anyone else who has had these type of issues after their child had heart surgery. It's a very lonely place to be. Because he doesn't fit into any of the actual "labels" we really feel strongly it's an injury and not something he was born with. He's such a sweet child and very smart inside of himself. He has such a hard time getting the info. from his brain to his hand or his mouth. We are very blessed to have him as any parent would be after surviving heart surgery. I would like to know if others out there have my experience though.

Carly - posted on 02/13/2009

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Ashlyn had DORV, which is like TGA. She had surgery at almost six weeks old, which I hear is rare because they do it sooner, but she sis so well before surgery. Now she is five months, medicine free, and doing great with a small hole in her heart.

Trisha - posted on 02/09/2009

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Oh my goodness Kara - poor little Delaney! I'm glad she's doing better and you didn't have to put her in the hospital. My son Ryder just had pneumonia. He's doing much better now. It's scary when our heart babies get sick like that!

Kara - posted on 02/09/2009

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Delaney was born in August 2007. She was not diagnosed with TGA until she was about 10 hours old. She had 2 helicopter rides to get to Riley in Indianapolis where she had the switch procedure done at 6 days old. She had a tough time coming off the ventilator, but once she did, we were released quickly after that. She has been doing really well and we were not rescheduled to have another follow up for 12 months! We have had a tough week, she got RSV (even though she gets Synagis), bronchiolitis and croup. We have been on a breathing machine and nebulizer for the last 6 days, but she is getting much better and we feel blessed that we didn't have to be hospitalized for it.

Trisha - posted on 01/19/2009

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My son Ryder is 4 and he was born with TGA. He had the switch when he was 4 days old. He visits the card once a year and has an echo (we've never had a cat scan). He just has his annual visit in Dec. He has a slight leak in his aortic valve. The card says it's very slight and he isn't concerned with it right now. Actually, he doesn't want to see us for 18 months. Other than this Ryder is healthy and normal. He has had some feeding issues (GERD as an infant) and he's really picky. We took him to feeding therapy for a few months and that really helped. Anyway, he will be starting Kindergarten in the fall. Like you guys have said, you would never know anything had been wrong with him. He's smart, funny and VERY active.

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