Transposition of the Great Arteries - Luke's Journey

[3226919]

Our baby was born last Dec. 17, 2011, after 1 day they find out that he has TGA. We transferred him from Sitka, Alaska to Seattle, Washington. Surgery is the only way and we had no other choice but to give it a shot. And now the surgery is done, were just waiting for him to be fully awake so that they can put out the tubes so he can do breathe on his own. We've seen your struggle and hoping more that our baby would grow as other normal child is. Thank's for posting you own experience.

[theguyinthefunnyhat]

Hi. I love this story. I had the same when I was little, infact, when I had practically just been born. I had TGA and it was corrected with an arterial switch. I'm now 16, I wasn't supposed to live even up to 15. During 1 night, My heart stopped 7 times, the doctors said to my mum that if the breathing machine stops, they will turn it off and let me go. I LIVED!!! I'm happy to share my story, this story touched me and made me realise how special I am. LLL (long Live Luke) <3 Thank you.

[JCASHrip]

I must say that going to pediatric hospitals with professionals specialized in congenital heart defects makes a big difference. When I was on rotations at Cardinal Glennon Children's Hospital, those physicians constantly checked on their wee little babies with TGA, Tetralogy of Fallot, VSD, etc. It just goes to show to research the hospital you go to before you put your baby's life in someone else's hands. Pediatrics is the best!

[Smokybarrel]

My done had his surgery on 8 aug 2010 and is as of now 15 months old. He had TGA with VSD and ASD. He pulled through the surgery like a champ and is all over the place now! I know how y'all felt during all that too. It tour me up inside so bad when I first heard the news and even more watching home go though all that. But still I thank god every day for my son and I just don't know what I would ever do without him now!!

[bellezasecrets]

thank you for sharing this video, we just found out that my sister's baby has TGA and although we are concerned, we are firm believers that he will be fine. 

[cdhayman100]

My daughter was born in l971 with TGA. She has just turned 40. She is married with 2 children , she is a teacher and is and well and happy. She did not have the more up to date procedure, but has had no problems so far. She has had excellent care. Surgery at Montefiore for the Mustard Procedure in 1972 and a correction in l973. She takes good care of herself which is important.

[NewBoiiTV]

My name is Tony Stewart Jr. In 1991 I underwent TGA. Ill b 20 in september..God bless!!!!!!!!!!! please add me

[KidsRtheWorld]

my husband was born with TGA hes had all the surgical procedures he is now 33 yrs old and doing good we have had some problems with shortness of breath and with the pacemaker as he is stubborn and wants it under the muscle where its protected more...im glad everything went good for ur son may god be with him and protect him always :)

[JessMsLovely]

i am 22 years old now. i was born with TGV i am doing great now. best wishes to you and your family. i am so glad hes doing good. thank you for making this video. Luke is a very lucky, strong baby. im sure he will do great in his life. =)

jessica

[bbtoffoli]

Every time I watch this, I cry and remember my son´s VSD surgery, and realize how small we are before God´s blessings.

[alaroad]

Hello i am french, i am living ine Ardennes in the noth of france, my little girl was born two weeks ago, and she has been opered free days ago...now she can breathe alone, and she's starting to drink some milk...

It's such a hard moment to live but we've got to think about the future...and trust in those chirugians who give a new life to our child...

[NaruzVidz]

Thank you so much for your video. Luke is absolutely beautiful. Our nephew is due in a couple of weeks, he also has TGA. We are praying for him and we hope he comes out of this healthy and strong. Seeing Luke's video gives our hope a great boost. Thanks again

[idobelieveinfawies]

How Is uR lil baby doing?. My lil nephew is having the same surgery on monday at Texas ChilDren's Hospital, do u have any advice for us tips?! im so nervous. my email is carina.mejia10@hotmail.com

[bleckndecker]

My nephew just had this done at Sick kids in Toronto, he is on his way home as I type this, two weeks later, so glad he made it through. Great video too.

[familiehoogendoorn]

My son Levi, just over 7 months now had also TGA. You can watch his video on youtube. com/watch?v=5n6dVI7SKbw. If anyone wants more information, feel free to leave a comment on our video.

He is such a wonderfull boy now, smiling the whole day!

To God is all the glory, He was so near to us during the hospitaltime!

[whoopdiddydo]

My son was born April 6th, 2010 and diagnosed with TGA 24 hours after birth. He had his switch operation at three days old and his chest was left open for 4 days. Words can't grasp how it feels to be a parent (first time) and going through that. My son had surgery a month later for Pyloric Stenosis and all went well.

He is now 4 months old and beautiful and you would never know what he went through. Thanks for your video. It reminded me of how fortunate we all are.

[treyegirl]

Previous comment wasn't complete!

After spending 2 mths in the hospital, my daughter was finally released. She was 4 days old at surgery, and we were told she wouldn't survive. She is now 10 beautiful years old, and the joy of our lives!

[treyegirl]

My daughter had the exact same heart condidtion as your son. She also was rushed back to surgery, and her chest was left opened for 5 days. U

[THEmwt]

So pink and well perfused after his heart was fixed! He is just beautiful!

[AdrianaGalanis]

I know you must be a very busy person and I don’t want to take too much of your time. However, on my 23th week of pregnancy my baby was diagnosed with a heart defect called Transposition of the Great Arteries and will require surgery immediately just after birth.

Would you be kind enough to give me some words of advise and some information to put my mind at ease. In the past one week I've being watching this video a million times, your son being my hope. God bless your family!

[twlessly]

I had the same surgery 26 years ago. I was one day old

[ludybeal]

i am so happy for Luke!! i had a baby on 2002 and he was born with TGA, i didnt know. i took my baby home after he was born and he was getting sick.. so i had to take him to the hospital again and then thats when the doctors realize that his heart was too big... and that he had TGA.. my baby didnt make it.... i was with him day and night... he died after a month an a half he was born.... but when i saw this video i felt so happy for luke!!! god bless u guys!!

[mannurse714]

My son was born yesterday, he has TGA. We are so scared for him. He will have surgery to correct this defect probably at the end of the week. If you have any suggestions for websites or resources to learn more about the surgery I would appreciate it.

Thank you for posting this video it gives us hope and encouragement. God bless you and little Luke.

[austinwengirl]

@mannurse714 We are thinking about you and praying for you little guys successful surgery and speedy recovery.

[TheShadowskye]

@austinwengirl I'm 22 years old and was born with TGA. I had my operation when I was 9 months old and can't remember it happening, only through my hospital visits. I'm healthy and working full time and live a normal life.

I was told I had an older version of the operation back in 1988 with more risks involved but even with that I'm strong, healthy and love life.

I hope this is helped with your concerns, feel free to ask me anything. I'm very happy to help :)

All the best with your new baby.

[twlessly]

@mannurse714

I was born with this same problem....I am 26 years old now. Your son will be fine. It is scary I know. I am praying for your son. If you need any more details you can email me at travis.lessly@yahoo.com. They have so many more technologies today than they did at my birth.....hang in there he will do fine.

[TheShadowskye]

@mannurse714 I'm 22 years old and was born with TGA. I had my operation when I was 9 months old and can't remember it happening, only through my hospital visits. I'm healthy and working full time and live a normal life.

I was told I had an older version of the operation back in 1988 with more risks involved but even with that I'm strong, healthy and love life.

I hope this is helped with your concerns, feel free to ask me anything. I'm very happy to help :)

All the best with your new baby.

[TheShadowskye]

@mannurse714 I'm 22 years old and was born with TGA. I had my operation when I was 9 months old and can't remember it happening, only through my hospital visits. I'm healthy and working full time and live a normal life.

I was told I had an older version of the operation back in 1988 with more risks involved but even with that I'm strong, healthy and love life.

I hope this is helped with your concerns, feel free to ask me anything. I'm very happy to help :)

All the best with your new baby.

[davitodude]

Good luck in life baby Luke.

[dougie131205]

im so glad your little boy is doing well, my baby boy was born oct 2009 with tga it was undetected he had sugery at 7 days old and then was home 6 days after is surgery, he is doing really well now just has yearly check ups at the hospital, it is so nice to read the posts on here of so many people with other children that have tga and are now growing up and doing really well it gives me more hope as i dont no anyone with it, i wil look at updates of luke he is beautiful,god bless all the babiesx

[WAKECHICK72]

I enjoyed your wonderful video of your sons journey. My son Luke who is almost 5months has TGA L type, venticular inversion, and a vsd. He will be having surgery at around 9months. Thanks for sharing your video.

[jessicalynn10283]

Hello, my son was born on June 1, 2010. We had NO idea he had TGA, VSD and pulmonary stenosis. At two days old they put a BT shunt in, and now we are still at Children's Hospital. We have to wait for the TGA surgery until he is 9-12 months old, they want his pulmonary artery to grow some more. Im so beyond scared...

[cathyaroe]

thank younfor sharing your story. We are having a grandbaby with Greater vavles reversed soon.

[rosita616]

This video touched my heart..My daughter was born on January 25th of this year with transposition of the great arteries and multiple VSD's. She just had the arterial switch operation a little over 2 weeks ago and she is still recovering. These last 3 months have been hell for me and my family and seeing this video of your little boy looking so healthy and happy gives me hope and I know my little girl will be home soon. Thank you for sharing this, god bless you and your family.

[DOOMFIRE91]

i went thru this with my son, he is now 9 mounth old, its amazing what can be done but more amazing knowin wot the little ones have been through, i carnt say enough thank yous to the surgeon who saved my little boy hes my little solider.

[austinwengirl]

Luke is doing great! Looking at him now it's hard to believe he went through all of this!

[albinosupport]

I went through the same thing with my precious son James, he also had to have surgery on his diaghphram as it was damaged during the arterial switch. He's now nearly 15 years old and in great shape. God bless you and I hope your little boy grows into a strong man xx

[nikos24productions]

i'm 20 now going to 21 on april. though i am having a problem with fatigability i can say that i am blessed to have reached this age. i have been born with tga ,vsd same as luke and i had a senning atrial (not the arterial switch).

through here i want to learn and share stories with anyone who share the same procedure that i had. bless you luke, bless us all with this kind of heart.

[JessMsLovely]

@nikos24productions i had the same operation. im almost 23 now. im glad to hear about someone the same age as me doing good with the same operation.

[MrsBryant2009]

God Bless you and your Little Angel. I just went through teh same thing with my daughter, She just turned 15 months old and she had a complete repairment for VSD and Tetrology of fallot at 5 mnths odl weighing only 9 pounds at the time, it was by far teh hardest thing i have ever been through, i thankgod everyday for helping us get through it and lthank him for my angel being healthyand alright, shes a normal child. God is Great, With god all things are possible. .

[kokofemme]

I am a nursing student and I would like to THANK YOU for sharing Luke's journey. You have helped me to understand just how serious of a condition this can be and was for your baby boy. My heart smiled as I continued to watch. You are a blessed family and Luke is absolutely adorable!

God Bless you and your family. Happy Holidays Luke!!

ஜ♥ Kokofemme ♥ஜ

[OvellaRasho]

My son was born Sept 1st 2009 and had to go through the same surgery on Sept 9th 2009 It was very horrifying I couldnt sleep knowing he needed this surgery I am so happy and greatful he is doing really good! Its hard and tough but glad your baby is doing great too :) I had a question though I wanted to circumcise him but they wouldnt do it because he needed to do the surgery first now do you think id be able to have it done? did you have Luke circumsized after surgery?

[SINTRAY22]

my son is about to receive the same surgery, circumcision at the same time as open heart surgery, please,

[SINTRAY22]

watchin your post has given me hope fingers crossed same outcome.x

[austinwengirl]

They wouldn't circumcise Luke before or during the surgery. They told us it was more important to deal with saving his life and that would complicate things. You can circumcise the baby after they get bigger-- meet with a Pediatric Urologist and get the pros and cons. We were told he would have to go under anesthesia again which was a real concern for us.

[aliciaa1978]

what a beautiful baby and a beautiful outcome...

[TheAussiegirl81]

im in australia my daughter was born with tga she had surgery when she was 6 days old in dec 3rd 1992.from the day she was born until the day she was discharged [4weeks]she was in 3 different hospitals twice each.she came home xmas eve 1992.she will be 17 next month ty to all the wonderful doctors,nurses and surgeons at the royal childrens hospital melbourne

[babycasper121206]

My son was born 6/10/2009 with TGA.. He had surgery 8 days after he was born. Hes doing great now. I watched this video several times before i even had him. Thanks for kinda preparing me for what was going to happen!

[zone1282]

my son was two weeks old when he had this done in 2005. TGA with a septical defect. we stayed at the ronald mcdonald house in Austin. Childrens hosptial did the produre. He is a health 4 year old now and potty trained. What is bad about this situation is that the morphine is very bad the baby cries from coming down off the morphine i know my son did. Also the factor of getting sick during the first year. Good luck to any parent that has to go through this.

[tiffany36009]

I was born in Charlotte N.C in 1988 with TRANSPOSITION OF THE GREAT VESSELS and at 3 months old I was Flown to Houston Texas to have my surgery done, my parents had lived at the ronald mcdonald house for 2 months while I was in the hospital after my surgery. I have only had ONLY that 1 surgery at 3 months called the sening or A.K.A. mustered procedure... I am 21 years old now and have a 2 1/2 year old little girl. Both of us are very healthy and goin strong. Hope all is well and God Bless!!

[madelineknoll]

I was born with an atrial septal defect and transposition of the great arteries and after 22 years I'm doing very well. I found Luke's heartwarming journey as I find research for school. I hope he is well! God Bless!

[Javith46]

Yo he sido operado por trasposicion de los grandes vasos de nacimiento y 22 años despues sigo vivo, con buena salud por ahora y espero que asi sea si dios quiere. Animo seguro que sera un niño increible.

I have been operated by transposition of the great vessels of birth and 22 years later I still live in good health now and I hope it will, if God wants. Animo sure will be a great child.

[Ariannabrooke]

I was making a picture journey of my granddaughter. She too had TGA. She survived for 7 weeks after her surgery and went home with Jesus. I never got to finish and show her her journey. This has brought many memories back for me. She was able to be home for 5 weeks with her mommy. She died after visiting her great grandma in her carseat on the 15 minute drive home. How is your son doing now? He is a cutie pie.

[dunkhunt32]

I was born on March 28, 1980 with TGA. Back then they did not have the atrial switch they had the schumacker repair. Instead of doing a complete switch they made a round-about way to pump my blood. Now my aorta pumps blood to my lungs where my plumonary artery pumps blood to my whole body. I am on medication. I have a pacemaker. I have no limitations. I know your son will be just fine, kids with TGA are fighters. God bless you.

[gfserafini]

I was born November 5 1990 i also had the same surgery and after that i had 2 other operations of my pulmonary artery and im not on any pysical limitaions and medications either

[aga60154]

Thank you for the video, what a beautiful little boy !!! My son was born in Sept. 06 with TGA and had his arterial switch also at 5 days old. He's doing great right now and we feel sooooooo lucky to have him !!!

[sarahrich5]

Our daughter was born December 21st, 2007 with the same condition as Luke. Maddie had the arterial procedure on December 31st...she turned one last week..what a change from last year this time. Seeing your video brought back so many emotions. Wishing Luke and your family a lifetime of love and health

[mattandamys]

Thank you for your sweet comments about Jackie! I noticed a Baylor shirt in your video...I graduated from BU in 1991, then Baylor Nursing School in 1993.

[ladnern]

my daughter also has transposition of the great vessels. she is now 10 years old. she had her first surgery when she was 2 1/2 and second at almost 4... it has been a long journey but she is healthy now, thank god!

[Rojo0416]

What a great video.

My son Cooper had the same condition back in July of 2007 and had the procedure 5 days after he was born.

Your video brought back a lot of memories...all those monitors (sat levels, etc.) What a painful time, but today he is a happy boy.

I am glad your son is doing well.

[1992peter]

May God bless you.

Your son is in my prayers.

God bless.

[magbitangs]

My son Jordan was also born with TGA on March 29, 2007. He had his surgery when he was 3 days old. He's doing very well. Glad to see that Luke is doing well too. God bless you and your family.

[cumcup69]

im 17, and i had the surgery at 2 days old...i go for check ups every 2 years, and everything has been good.

congratz on luke

[MixMaster3210]

I had that, now im 11 years old and im fine.I live in Madison WI. I was 8 days old. i had the surgurey at the childrens hosptal in milwaukee

[boilinginlove]

how do u make videos like that i cant figure it out

[smstan66]

You are so lucky to be able to bring your baby home! My son never had the chance. He was born prematurely at 32 weeks and had heart suregery a few days later! He also had a hole in the heart and PDA. The surgions hands were like spades and our sons heart was the size of a wallnut! He is a very special man. Our son Alfie lived for 51 days but died from an infection (endocarditis). Unfortunately, Alfie was not one of the lucky ones and lives on in our hearts. God bless you and your family.

[austinwengirl]

I'm very sorry for your loss. Alfie was lucky to have parents who love him so much. Our thoughts and prayers are with Alfie and your family.

[worthy19]

we have a baby with TGA and watched your beautiful vid.we would to know the name of this song on your vid. We are two weeks away from birth and are excited and scared wish us luck.

[austinwengirl]

The song is "Lullaby" by the Dixie Chicks. I wish you guys the best of luck with your new baby. We'll keep you in our thoughts and prayers.

[zezona]

hi, my son was born with V.S.D. too, and had the surgery on June 1st, last year, when he was 3 months old in a just born baby body. there were many times I thought I was going to lose him, but thank God, after surgery, he got really fine! Now he´s 1 year and 3 months old and healthy boy...

Best wishes for you all who´ve gone through this, and thank you (Luke´s mom) for sharing this video.

[carlknnedy]

Our daughter had the switch in Boston in December 1987 at 1 month old. She is doing well and going to college here in California. We have walked in your shoes. Hang in!

[tambone007]

i had tga when i was born i am now 35 yrs old back in 72 when i had my surgery it was new i just wanted to write to let u know we make it i have 2 kids 18 and 15 and living a good life i see alot of doctors but even they are amazed so i can only say god bless u luke from one tga surviver to the next

[cumcup69]

god bless you tambone, from one tga survivor to the next

[tambone007]

god bless u too.i went for yearly checkups too.i go more now after my kids were born it hurt me did your doc say anything about kids?

[cumcup69]

i dont think so...not to me at least...what would he have said about kids?

[tambone007]

only because my mom told me after i had mine the docs told her it would be best i didnt have any.my heart was fine til i had mine now i have to get a transplant and i am on my 3rd pacemaker maybe just ask your doc how it would affect you.i only say this to help u not go through what i am now good luck to u and god bless

[adamjaleal2]

my 3 year old has had the transpositon arterial switch when he was 5 days old i went through hell i never got to hold him until he was 1 month old

[deloresb73]

I completely understand your pain. My son had TGA and had the arterial switch at 3 weeks old. He is now 8 and has never had any complications yet. Things will only get better and one day he will be old enough to view this himself. I wish I had done a video. All I have is a few pictures. Good luck for a long and prosperous future Luke.

[lovemydaughter06]

I am so glad to see that you beautiful baby boy is getting stronger and better everyday, I was very touched by your video, luke is so adorable and has a beautiful smile!!! Please keep us posted on his progress.. thanks for sharing his journey with us!!! My prayers are with Luke always!

[AddiesMamma]

My daughter, Adelle, was born with a CHD as well, her's was HLHS. She didn't make it long enough to even get to come home, everytime I see one of these videos where a baby is just thriving I know my daughter is whispering in my ear,"this is why we spread awareness, mom." Keep fighting, as we all know it is a VERY LONG, LONG road, but so worth every minute.

[1234jojogirl]

What a beautiful boy. Thanks for sharing this video. It's uncanny how many similarities our boys have. The same bouncy chair, the same little LeTop cowboy outfit. We've seen our son in the exact same CVICU wrappers. And our son also had TGA, repaired at 5 days old. God bless you, I hope your boy is well.

[krisk0469]

He is so handsome !! My 8 month old is having his 1st open heart surgery in a few months. I cried all the way through your beautiful video. Thanks for sharing !!

[lynnbrum]

He looks fantastic, thanks for sharing your video. Louis was in surgery for 9 hours and i remember it been the longest day of our lives too. He is a little star. XXXXX

[3pinking]

What a beautiful precious boy. Well done on the video. My son also had TGA, ASD, VSD. He was not diagnosed until 6 weeks old.  He is healthy and vibrant now. Your videop reminds me of him quite a bit.

[cjheboothby]

Thank you for your beautiful video. It's comforting to know others have been through what we have. It's a long road, but it's our baby's lives that are at stake. For that I would sacrifice anything and everything. Thanks again for your video