CHD, TGA, ASO – a few small letters that have changed my life


My son has a Congenital Heart Defect (CHD). He was born in March, adorable, snuggly, starving, and seemingly perfect. It was a moment when nothing could possibly go wrong he was ten days old, gaining weight and loved a good cuddle. I gave him one last big snuggle and then left him and two of his sisters with grandma while I took the other sister on a mommy daughter date. I had no way of knowing that it was the last time I would hold him for another 2 weeks, and possibly forever. Life was perfect and wonderful, then I came home. The first thing I heard as I walked through the door was my frantic mother-in-law saying something was wrong with Jacob. I rushed into his room and there he was in his crib, eyes closed gasping for breath, moaning, limp, and non-responsive. I remember thinking at least he isn’t blue yet. I have never been so scared in my life. I called my pediatrician and talked with our incredible nurse and was told to bring him in straight away, but if he turned blue to go straight to the ER. I charged for the car and zipped over to the doctor’s office, only 2 minutes away. I grabbed my boy and charged in with the blanket on his head to keep the wind off, he must have turned blue in the two minutes it took to get there because the nurse snatched him out of my arms and went charging across the street to the hospital ER. We pounded on the ER door and before I knew it he was stripped on a table with doctors swarming around him responding to a code blue, wait it was my sons code blue! What was happening? Bewildered and shocked don’t even come close to the feelings that were charging in on me from every side. My pediatrician came in on his day off and my husband came rushing out from work. The Bishop from my ward (congregation) met us at the hospital. I’d like to say I was the picture of calmness and confidence and that I held it together so well, but I didn’t. I was a basket case, sobbing, scared and praying my heart out.
They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect. We were grilled, any history of congenital heart defects, and they rattled off a few, to which we shock our heads blankly wondering what the jumble of words even meant. Then they were talking about transport to ICU in Emmanuel Children’s Hospital, and I knew we were in for a ride. They called for ambulance transport but when it arrived it was 5:30 p.m. and they were worried that with the traffic he wouldn’t survive the trip, in fact they weren’t sure if he even had another 20 minutes, so life flight was called in and my husband and I watched as the helicopter landed from our car and then we took off.
When we arrived at the hospital we raced up to the ICU and stopped dead in our tracks. There was a huge sign hanging on the ICU doors: STOP! EMERGENCY SURGERY IN PROGRESS! We knew it was our son and so we let them know that we were here and went to wait for a nurse to come explain what was happening. We were informed that his condition was called Transposition of the Great Arteries (TGA). His Aorta and Pulmonary arteries were switched and so the blood from the lungs with oxygen wasn’t making it out to his body it was just being sent back to his lungs. He was basically suffocating because he couldn’t get any air. They were doing a special procedure that would open a small hole in the wall of his heart that would allow the blood to mix and oxygenize to keep him alive until surgery. They had to do it in his room because he was close to death when he arrived and they didn’t have time to set up the lab. Well it worked and he stabilized a bit and we had to wait until his body recovered from the immense shock it had underwent. Doctors explained to us that his condition was correctable through a surgery call the Arterial Switch Operation (ASO) in which they do open heart surgery and switch his arteries and all the little connecting vessels that go with them. It’s amazing they can even do all that. Jacob had surgery on Easter Sunday. He had priesthood blessings, countless prayers and fasts from all denominations, and the service we received from members of the church was amazing. We witnessed so many miracles. We finally made it home after 2 weeks in the ICU, 1 week on the regular pediatric floor, and more scary moments of collapsed lungs and low oxygen levels. He is doing fine now. 30 years ago he wouldn’t have lived much beyond his teens with the operation they did then, and 10-20 years or so beyond that he just wouldn’t have lived. I thought my life would somehow return to normal, or as normal as it can get with four kids, but my life is now filled with doctors appointments and worries of development and lung problems. But I will choose every time to have these struggles and have my son than to have to bury him. I now know tons of families that are “Heart” families where before I knew maybe one. I thought heart defects were rare, but they are more common than childhood cancer. And I live everyday grateful that I have a son that I can hold and snuggle and kiss on his cute little head. I have come to realize that we never know when we might hold or hug someone for the last time, so I give my kids the biggest hug every day just in case. I’m sure they will love that as teenagers. πŸ™‚ God is a God of miracles I see them every day.

26 Comments

Filed under CHD, Children, Heart, Jacob, Miracles, Parenting, Religion, TGA

26 responses to “CHD, TGA, ASO – a few small letters that have changed my life

  1. What an amazing story! You guys have such faith, and I’m glad to know that your son is doing well. This also shows us how our trials make us so much more aware of our blessings, too, doesn’t it?

  2. I have chills.

    On March 17th our friend’s baby went in for open heart surgery (not an emergency, as your son’s was) and two days earlier our other friends’ baby was stillborn.

    We donate blood and pray. What else (really) can you do?

  3. You can’t even imagine how much those prayers mean. We felt every prayer, we were surrounded in a little spiritual bubble. Just being there helps so much. I don’t think our friends, family, church members, and acquaintances will ever know just how much they helped. Just know you make a difference

  4. I can only imagine what you went through. My son (1st baby) was hospitalized for RSV at 8 weeks old. I didn’t understand the seriousness of what was happening.

    He stayed in the hospital for three days, and I stayed in his room for the whole three days.

    Looking back now I realize how scary that really was.

    We had just moved to ABQ from PHX 7 weeks before, we had no family and no friends yet. The ward members were very supportive, they only knew us by name, but were there bringing meals, and blessings, and prayers. I am so greatful for them. (p.s. I am wiping tears away so I can actually see the screen)

  5. I know it is a post that is fraught with harrowing details of tense moments, but…

    I just can’t get over that picture! That is the cutest little guy I have ever seen. I’m so glad he made it.

  6. I’m so glad everything turned out all right! I agree with Sariah, trials make you so much more aware of blessings. I just hope I never have to have a trial like that.

  7. Isn’t it amazing what modern medicine combined with prayers can do? I had similar experiences with all of the scary hospital stays with my daughter’s birth… 20 years ago, she wouldn’t have been born, and I would probably be dead. I will e-mail you… we need to talk πŸ™‚

  8. I’d love to talk April πŸ™‚

  9. haha april, I read that wrong. I thought you said that your daughter was born 20 years ago and I was thinking “wha?”

    Back in pioneer days I wouldn’t have lived for more than a few days after Jenacy was born (she was just fine though). She hit something wrong on the way out and I had an internal hemorrhage (and subsequent hematoma).

  10. If you ever need anything please let me know.

    Best wishes for a Happy New Year!

    Karin Coulter
    Saving Little Hearts

  11. Saving Little Hearts

    If you ever need anything please let me know.

    Best wishes for a Happy New Year!

    Karin Coulter
    Saving Little Hearts

  12. Hi my name is chrystal! My son has TGA too! they found out only an hour after he was born…and kinda already figured he had a problem before then! I thought my story was scary!!! but yours takes the cake! Way to go for being such a strong mommy I couldnt agree with you more thousands of docs appointments and constant worry is better than no son at all!!!!!!!!

    You may find this strange but I got a comment from you on myspace and just wanted to make sure it was actually you as I have had some wierd people posting on my page lately! figured this was the best way to verify!

    Chrystal L.

  13. Hi my name is chrystal…my son was born with tga too… I thought my story was scary but yours takes the cake! way to go for being such a strong mommy! I tried leaving a comment before but I dont think it worked. Your lil one is such a cutie! ive noticed in most cases tga seems to be in boys.. hmm… anyways…

    I just wanted to message you here because I got a comment from you on myspace (this may seem rude or wierd but i gotta ask) I am not sure if it is really you.. I have had a lot of rude harrassing people who i have had to block who keep trying to make fake profiles.. and i figured this was the best way to verify it was actually you! sorry if it seemed rude!

    Id really like to talk to you even if it wasnt you who posted… I dont know anyone else who has a son just about the same age as mine with TGA… it would be great to talk to someone that does… Kai has to go into surgery well more like a cath procedure because his pulmnary artery is way to small for him! it was 50% smaller than normal which they didnt know till they cut him open and saw… so now hes out growing it! =/.. so they are going to use a cathader to hopefully stretch it out.. he will probably need more procedures in the future… anyways.. hope to hear from you…

    Chrystal L.

  14. Kai's Mommy

    Hi my name is chrystal…my son was born with tga too… I thought my story was scary but yours takes the cake! way to go for being such a strong mommy! I tried leaving a comment before but I dont think it worked. Your lil one is such a cutie! ive noticed in most cases tga seems to be in boys.. hmm… anyways…

    I just wanted to message you here because I got a comment from you on myspace (this may seem rude or wierd but i gotta ask) I am not sure if it is really you.. I have had a lot of rude harrassing people who i have had to block who keep trying to make fake profiles.. and i figured this was the best way to verify it was actually you! sorry if it seemed rude!

    Id really like to talk to you even if it wasnt you who posted… I dont know anyone else who has a son just about the same age as mine with TGA… it would be great to talk to someone that does… Kai has to go into surgery well more like a cath procedure because his pulmnary artery is way to small for him! it was 50% smaller than normal which they didnt know till they cut him open and saw… so now hes out growing it! =/.. so they are going to use a cathader to hopefully stretch it out.. he will probably need more procedures in the future… anyways.. hope to hear from you…

    Chrystal L.

  15. Wow, what a story! I am so glad that you found our blog. I am very new to bloggging and didn’t even know you could search for specifics.

    Your little guy is soooo sweet! Isn’t it amazing what modern medicine can do? My husband and I consider it a miracle, truly, just as much as spontaneous healing, that sergeons have the capability to rewire hearts!!!

    God is so good, isn’t he? I can truly relate to your story, so great to find someone whose gone through the same experience.

    By the way, what denomination do you belong to? I noticed your comment on prayer, we had sooo many people praying as well…from all around the world, Europe, Hawaii, Australia, my brother goes to a Catholic church (we go to a baptist church) in Toronto, and his priests did a couple of masses just for our Joseph. I was so thankful! Our church, on Joseph’s day of surgery, had a people praying for a full 24 hours, as well as other friends having prayer meetings! God loves to work when we ask.

    Anyway, sorry this post is so long. Please feel free to keep in contact with me!

  16. To the Walsh fmaily – I figured I’d answer your question here, and hope you see it here. We are members of the Church of Jesus Christ of Latter-day Saints. We had Jewish friends, catholics, methodists, and many other demonitations praying on the day of Jacob’s surgery. The members of our congregation fasted on his behalf. It is endearing to see faiths unite on behalf of someone so dear to you. I wholey agree with you that God loves to work when we ask him too. Thanks for writing. πŸ™‚

  17. Matt, Christine, Elijah, Joseph & TBA

    Wow, what a story! I am so glad that you found our blog. I am very new to bloggging and didn’t even know you could search for specifics.

    Your little guy is soooo sweet! Isn’t it amazing what modern medicine can do? My husband and I consider it a miracle, truly, just as much as spontaneous healing, that sergeons have the capability to rewire hearts!!!

    God is so good, isn’t he? I can truly relate to your story, so great to find someone whose gone through the same experience.

    By the way, what denomination do you belong to? I noticed your comment on prayer, we had sooo many people praying as well…from all around the world, Europe, Hawaii, Australia, my brother goes to a Catholic church (we go to a baptist church) in Toronto, and his priests did a couple of masses just for our Joseph. I was so thankful! Our church, on Joseph’s day of surgery, had a people praying for a full 24 hours, as well as other friends having prayer meetings! God loves to work when we ask.

    Anyway, sorry this post is so long. Please feel free to keep in contact with me!

  18. Julia, you and Paul are special peoople whom the Lord has called to care for one of His very special little ones. I believe this with all my being. I am a sibling in a family with three brain injured children. In those days nothing could be done for them. I know the — Ward will support not only you two and the baby (what a cutie!) but your other kids as well. And they (the kids) will need special support too as they learn to deal with a “special needs” sibling. Thank you for sharing your story. It helps those of us who will in future have to deal with similar situations, and helps others of us to empathize with your situation, opening our hearts’ circle just a bit more.

  19. Tracy

    You’ve told your story so well. I’m always sorry to hear of someone else who has gone through a similar situation as ours….because I know how it feels to feel so helpless when your baby is sick. Our son was born on 04/04/05 with TGA. It was diagnosed within the first 12 hours after he was born and had his surgery the following day. I can relate to the heart ache you must have felt and how you really do have to rely on your faith to get you through it all. If you want to contact me for someone else who has “been there” please do! My email addy is
    tracyboudreau@eastlink.ca
    Take care…

  20. Thank you for sharing Jacob’s story. I am glad that you made in time to the hospital.

    Blessings to Jacob’s future.

  21. Hi,

    I came here from your photo hunt picture of Jacob.

    As I told you there, my son, Jacob, was born with heart defects and when I came here and saw that your little guy had the same defect, I knew I was meant to be here to encourage you.

    Our Jake is now in his early twenties. The procedure he had was called a senning procedure. It wasn’t ideal, but it was the best that they had at the time. Your little guy had a MUCH better repair.

    I hope it encourages you to know that our Jake is doing well and lives a very normal life. Again, if you want to talk, you can find my contact email at my blog.

    Love and Prayers to you and your little Jacob.

    Kim Shenberger

  22. I’m Kathy’s sister, Heather. You’re story is so amazing. I am so glad your little boy is here with you and that he made it through that scary time.

    • Susan Jonsson

      I too know how scary all of this can be, my son Andrew is now almost 25 but was born with TGA, VSD, PS and has undergone three heart surgeries the last when he was 12 years old. Today, he is doing great and just graduated UC Berkeley. I had a lot of support through groups when he was younger and it helps so much to talk to others in the same position. Please feel free to contact me at ssuzyq75@aol.com if you would like to help. God Bless Sue

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