How do I preparing for a baby with TGA?

Christiane - posted on 12/30/2010 ( 10 moms have responded )

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Feb 2009, my son Matthew was born blue and not breathing well. The doctor said he was fine. We argued with the staff. My son after 2 hours went into cardiac arrest and could not be resusitated. His autopsy showed he was perfectly healthy and shouldn't have died. 7 months later, our son Simon died at 18 weeks gestation.
This son at 23 weeks ustrasound has been diagnosed with TGA- type D. They told me he will require surgery shortly after birth. I have to travel 3 hours every few weeks to the Children's hospital in Vancouver for the echo's and prenatals. I am told I will have to move down there for 2-3 months surrounding his birth and surgery. That will have to be done soon and I will have to figure out how to move with my 6 surviving homeschooled children and maintain 2 households.
After our two years of trauma and heartache at our losses, I must admit I am really scared. Everyone tells us not to worry that our baby is getting the best care and will come home, but struggle to believe that when our perfectly healthy baby before has died.
Anyone who has had to go through this. How do you get through the baby's surgery without going insane? How does the baby usually do after surgery. What am I to expect? How long until I can hold my child after surgery? I worry about attachment. I am so nervous. I guess I just need to hear from someone who has already lived through this.

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Jean - posted on 11/03/2013

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i pray for everyone who has to go thru this with thier baby. my son was born with tga. we had no clue he was born at 12:22 and the hospital didnt ship him out till almost 7 and the they shipped him by ambulance. his o2 was dropping below 40 it was the worst time of my lif to see that happening to ur little one you waited so long to see and hold we didnt even get to hold him till he was 9 days old. i felt the worst pain i have ever felt. they finally figured what was wrong once he arived to ai doupont hospital he had surgery 3 days after he was born. he is now 3 m old and weighs 16lbs and 24 inces long he doing good but now they are talking about a nother surgery. all we can do is pray and i wish everyone luck on what ever u have to go thru because it is hard and you never get the images out of your head. god bless all.

Nicole - posted on 09/12/2012

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Christiane. I am so incredibly sorry to hear about your losses. My brother and sister in law recently lost my nephew due to TGA. The dr ordered a level 2 ultrasound to be done and it was not done. This would have shown the TGA and they could have planned to have him born at a specialty hospital. The hospital waited too long to transfer him , he did not survive once he made it to the tertiary care hospital (20 mins away - chopper came 3hrs after he was born) The autopsy results also concluded that there was nothing else wrong with him. He should be here as should your 2 sons. I feel your pain . We are all grieving in my family, it is just the most difficult thing. It is good that you know ahead of time and can plan to have your child at the appropriate hospital with the appropriate care. The success rate is SO high with these surgeries. I will be thinking about you and your family. Take care.

Christiane - posted on 04/30/2012

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Daniel was 6lbs, 12 oz. He just celebrated his first birthday and had his one year cardiology check up. They have used the word robust a few times. They say his surgery is looking great. His bicuspid valve is competent with no leakage. They are very happy with his results.

He was induced 2 weeks early because his heart rate dipped. They didn't want to take chances. They gave him a septostomy at 24 hours old. He had his surgery at 5 days old and was released from the hospital at 9 days old and we were home, our real home by 12 days old. He has done so wonderful that we sometimes are surprised to see his scar. We did have a scare when he got a lung infection a few weeks ago and wound up in the ER blue and unresponsive. His O2 level was 77. But they watched him for 8 day in hospital with oxygen for 7 days. It did not affect his hear they tell me. He had a lung infection that a lot of kids got, but the ones under 1 year usually wound up in hospital because they are not big enough to fight it without help. He is back to his funny spunky self and we are very happy with how he is doing. His surgeon is opitmistic he may never need surgery again. We know things could change but we will hang on to what we can. He is a little behind with motor skills such as crawling or cruising. He just started doing the pull to stand, but it's not surprising. His surviving 6 older siblings are always carrying him, holding him, or anything else possible to keep him happy. When we get them to back off as of late, he is trying to do all those things. As for big baby. He started out quite small, but got big pretty quick. He's about 20% for length and 95% for weight. He didn't start any solids until he was 10 months old and still breastfeeds now. He is our little chunky monkey.

Rochelle - posted on 04/16/2012

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hi, im 28 weeks pregnant and i found out at 20 weeks my baby had TGA VSD, im not sure what sex of baby is and dont want to know, but been on lots of these websites and most tga babies are boys and normally larger babies also.

what did your baby weight?

Jodi - posted on 01/03/2011

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No problem. I know what its like to feel alone, and that no one understands. My daughter was so young when this was happening, and it kinda was rushed upon us with us having no idea untill after he was born. I pray that Matthew's journey includes a long life.. a life that gives you stress, a life that makes you yell from time to time.. and a life that you'd swear you could never live without. The beginning was hard I never thought Id ever let anyone touch him for fear of germs. If i could have bought a bubble or manufactured something to keep him safe from everything and everyone i would have paid good money. I still have days I realize i worry more than i should.. that I treat him a little diffrently than i did my daughter. You cant help it, it is normal. Matthew will endure something the rest havent had to and no matter what you cant help but shake your head in his amazement everyday. I will pray for your strength, your hope and faith to get thru this without loosing your mind. Those early days i didnt know how i made it thru those days.. kinda was zombie like. Today i look back and almost feel good having it be the past. Not one day goes by that I dont recall a piece of that journey when I look at my son, but I also look at my son as one of the strongest lil boys I have ever met!
God Bless

Christiane - posted on 01/03/2011

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I am always amazed at what parents will go through for their child. We are planning on saying our goodbye's before his surgery even though we don't know that he'll die. We are pretty optimistic with the surgery. But when a child has previously died unexpectantly you take all precautions. We just don't want our children not being able to say all the things they couldn't say to Matthew. This way they know they will say what they need to.

I know we will get through this. We've walked a worse path. But the uncertainty is so scary.

I am glad things worked out for you. You have know idea how excited I get to hear babies make it through any hardship and knowing that parents didn't have to bury any children.

All these words of encouragement are kept in my mind and will help me get through this. It really helps to hear the little ones who go through all this trial and come out happy, spunky growing babies. Thank you again.

Jodi - posted on 01/03/2011

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Congratulations first off. My son was born with TGA. We didn't know until after birth when I wascafraid hevwas breathing too shallow. The nurses took him and said they would clean him up and keep him under the heater. The staff told me at first they thought he had a lung issue, since his O2 sat was in the 70's but they were not too concerned because some babies take some time getting up to the 90's. The next thing I heard was he had a murmur and they needed to transport him to another hospital more equipped with getting him a CAT scan. At that hospital we were told about the heart defect, and that he was going to need to be transported again to Childrens hospital in Boston. I wasn't able to leave the second hospital with just being admitted and needing after birth care. We left the hospital that next morning without hospital consent, could leave my baby. That night before he had a invasive surgery to make one of the defected holes bigger to circulate the blood to the chambers, and to stabilize him before surgery. 5 days after birth he had his "switch". It took him about a week to heal. Surgery day has to have been the worst day of my life. Worse than hearing the Dx, I was so conflicted about becoming so attached to him..or not attached enough for fear of loosing him. I couldn't help but thrown in all my cards and pray and puts his fate Gods hands. Staying goodbye before going into the OR was excruciating.. Worse because I was alone. I slept beside my son the entire night before in a chair. My husband had to be home taking care of our daughter he came that am..but not in time to save my knees from buckling. We had few complications, none life altering. After the switch they couldn't fully close him because his lungs would have to much pressure on them. The cardiac ice wing staff were amazing and the days I had to drive home to be with my daughter I felt safe. When he was on the less intensive floor I was scared he was not as closely monitored and hated having to go..those nights I cried till I saw him the next day. Thankfully he wasn't at that side for long. He was born 1-21 had his surgery 1-26 and was home 2-6 I was able to take him home. I was able to hold him about 6 days after surgery. Bringing him home I was scared not hearing or seeing the monitors and my sleep those first weeks home were few and rare. But on a great note my son is healthy! He's turning 2 in a few weeks, and you couldnt tell him from any other 2yr old. He
Is spunky, a rebel..gets into everything and anything. All that is left is a small faded scar line on his chest and a little hole from one of his drains. But considering everything his war wounds are part of his fight. I had the hardest time hearing from anyone who hadn't gone thru what I was going thru... They don't know. You have had a hard road, I cant imagine the loss of a child. I know the feeling of almost and never want to go there again. I wish you lots of love, and internal strength. I pray for your upcoming journey. TGV has high success rate and out of all the heart defects TGV is the best to have. Sending my love

Christiane - posted on 12/31/2010

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Thank you. I'm glad your son is well. It does give some relief to hear success stories. I live in a world where children die, so staying optimistic is difficult. I am sure everything will be fine, but I hate knowing there is the chance of a baby dying during surgery. I will keep your message to help give me hope.
Thanks again.

Leslie - posted on 12/30/2010

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First of all congratulations on your son. He will be a blessing to you I'm sure. That being said, I understand your fear especially with the loss of two other babies. I was not diagnosed prenatally. My son was diagnosed with d-TGA a few hours after he was born. At 3 days old he underwent an operation called an Arterial Switch. It went great and at 9.5 months old he is doing amazing. I was able to hold my son once the day before surgery. Then after surgery it was a couple days before I could hold him. It really depends on how they do and how quickly they can get a lot of the tubes out. If I were in your position I might research which Children's Hospitals have the highest success rate for open heart surgery in infants. Since you have to relocate temporarily anyway, why not go to the best place possible.

When my son went into open heart surgery, it was the scariest most helpless moment of my whole life. The only thing that got me through was having family and friends there and lots of prayer. We kept people updated on facebook so we knew people all over the country were praying for our son. That helped me a lot.

It may not comfort you now, but our son's cardiologist told us that if your child has to be born with a CHD (congenital heart defect) that TGA is the one to have. It's the only one where they can essentially "fix" their heart. Other CHD's they give them a better heart than the one they were born with but with TGA they make the heart work the way it's supposed to. I pray all goes smoothly for you and your son and all your family.

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