Ava’s Story {TGA: Transposition of the Great Arteries; Open Heart Surgery at 3 Days Old}

by Birth Without Fear on February 14, 2013

Let me start by telling you a little bit about our pregnancy. We had an ultrasound at 11 weeks because of mild bleeding, which turned out to be a symptom of marginal placenta previa (a condition in which the placenta covers a portion of the cervix and if it doesn’t clear a c-section would be the only way to safely deliver). We had 2 more ultrasounds in addition to that one (one was the 20 week; the other was at 32 weeks to follow up with the placenta previa – which cleared). The ultrasounds showed everything looked great and we were excited to finally get our girl (we already have a son).  Ava was born at 2:02am on 9-11-10, one day before her due date. She decided to come very quick and was delivered naturally in only 3 minutes! The cord was wrapped once around her neck and I thought that was the reason she wasn’t crying very loudly – little did I know the worst had yet to come.

Newborn
CMH Newborn TGA

The nurses took her to the warming table and gave her right back to me to hold, followed by daddy and Grandma. After a few minutes of snuggling her up, they took her back to clean her up she was still very blue and her color wasn’t getting any better. They took her to the nursery and said they would be back. At 5:30am they told us that she would have to be transferred to St. Vincent Hospital in Green Bay, WI (35 miles away) by ambulance because they had better testing equipment to figure out what was going on. They told us that we could go say our good-byes and warned us that she was connected to a lot of machines before we went to see her. My poor baby, only 3 hours old, had a tube down her throat, IV’s and so many monitors hooked up to her. I was scared to even give her a kiss good-bye because I didn’t want to hurt her. Her daddy followed the ambulance to Green Bay while I had to stay back in Oconto Falls. My mother and her boyfriend came to support me in our time of need. Kyle called us with all of the updates that St. Vincent would give him (they were amazing at giving updates every ten minutes or so). The update I will never forget was the one that Ava needed to be transferred to Children’s Hospital of Milwaukee (CHW) to have heart surgery. Only 9 hours after check in, I was discharged so I could go say my good-byes to her and talk with the cardiologist. We got to Green Bay about 11:30am.

St. Vincent – when she was first transferred and where she got her diagnosis of Transposition of the Great Arteries
newborn Transposition of the Great Arteries

NICU at the Children’s Hospital of Wisconsin
NICU Children’s Hospital of Wisconsin

When we got to St. Vincent, the NICU staff was absolutely amazing. They even took pictures of her for me and had them developed so I could take them with me. We all met with the cardiologist where he told us that Ava had a congenital heart disease known as Transposition of the Great Arteries/Vessels (TGA or TGV).  TGA involves the aorta and pulmonary artery. The aorta and pulmonary artery are switched (transposed) and as a result, the aorta is connected to the right ventricle instead of the left. This sends oxygen-poor blood to the body. The pulmonary artery is connected to the left ventricle. This sends oxygen-rich blood back to the lungs. Because the blood contains less oxygen than normal, it causes your skin, lips and nails to appear blue (cyanosis). At about 1:30pm and the county rescue team called us to let us know that she made it to CHW. Once she arrived, she underwent a balloon atrial Septostomy. During this procedure, a catheter with a balloon on the end is guided through a blood vessel into the heart, inflated in the left ventricle and pulled through the right ventricle to create a temporary hole to allow for more blood flow. This way, more oxygenation blood can reach the body. We arrived at CHW the next day and met with doctors (all of which were absolutely amazing). They answered every question we could come up with and were very helpful. They drew diagrams for about everything they talked about which helped us explain to everyone else what was going on.

When she was 3 days old, she underwent her 1st open heart surgery. The hospital had a very nice waiting room, with so many toys for our 15 month old to play with and keep him busy for the entire 10 hours. During the procedure, a nurse came in the waiting room and gave us an update every hour (really helped pass time!). Dr. Michael Mitchell performed the operation, known as Arterial Switch Operation. During this procedure, they switched and divided the aorta and pulmonary artery, along with many smaller vessels. She lost quite a bit of blood but they were prepared to give her more. After her surgery, they let us see on her way out of the operating room for a brief moment before she was transferred to her recovery room. Once she was settled, we got to go and be with her.

Right after her surgery (her chest was still open and her heart was visible that is why the patch is on there)
open heart surgery patch newborn

She made amazing progress in her recovery. A therapist helped massage her body to help with the swelling she had. At a week old, she was finally able to start learning to eat (started by dipping a Nuk in milk). She got her chest sewn shut at 8 days old, her breathing tube out at 9 days old, 10 days old we got to FINALLY hold her and 11 days old she got all of her chest tubes and the oxygen monitor off of her.  She wore her very first outfit at 15 days old! At 18 days old, she was off all oxygen and 22 days old she got her feeding tube taken out. We got to go home after 26 days in the hospital. Once we were home, Aurora Visiting Nurse Association came two times a week (at whatever time was convenient for us) to check up on her and make sure her scar was healing the way it should as well as took her weight to make sure she was maintaining it. Ava did amazing at all of the tasks that were put in front of her.

When she was transferred to an Acute care center
Acute Care centre heartkid

When she was 4 months old, she underwent a second open heart surgery because she had a lot of narrowing in her arteries, something that wasn’t expected. They told us on a Friday that she would need surgery on Monday. She did amazing, once again. The doctors and nurses were just as helpful the second time as they were the first! We were only in the hospital for 13 days the second time. She finished her goals we had set for her in Birth to 3 – she struggled with a few things because of her surgeries but overall, she did great. Some of the struggles she had were sitting up, crawling, holding and tipping her sippy cup (she had to regain her shoulder strength) and walking. She did it though! Now she walks, runs, climbs and talks back!

Although Ava is only 27 months old, she has overcome more than most people will be faced with in an entire lifetime. None of us knew that we would be facing such obstacles but with a great support system and such amazing hospital staff, it is possible (not to mention great insurance). I wish I would have known about her disease as well as the Children’s Champion Club before she was born so that I could have somewhat prepared myself for what was about to come. If you are reading this story before your child is born, I hope it helped somewhat prepare you for what is about to come. I know that every story is different but one thing is the same – the services at the Children’s Hospital are amazing and I wouldn’t go anywhere else.  Ava is our little miracle and it is because of them, so thank you!

Just a few months before her 2nd birthday!
Healthy toddler

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{ 20 comments… read them below or add one }

Kristina February 14, 2013 at 6:06 pm

my nephew has this! He is just under 3 months old so he hasn’t had his surgery yet but he is doing really well.

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Kristina February 14, 2013 at 6:07 pm

oops, his is corrective transposition of the greater arteries so it’s a bit different

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Dee February 14, 2013 at 6:45 pm

What a beautiful story. Thank you for sharing your little Ava! She is just beautiful!

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Katie February 14, 2013 at 8:17 pm

Thank you for sharing this story and helping spread CHD awareness!! My 4 year old daughter has had 3 open heart surgeries and will need at least one more in the years to come.

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Bailey February 14, 2013 at 8:59 pm

Thank you for sharing your story. I’m in tears. When I was born, I had two holes in my heart, and a kinked aorta. The doctors told my parents that I would need open heart surgery, but that they had to wait until I was older *a few months*. When the went back and checked my heart again, one of the holes was closed and my aorta unkinked!

So now, being pregnant myself, I’m terrified of Sweet Pea being born with the same problems I had. I can only imagine the fear and pain you went through. I’m so glad to hear that everything turned out well for you and your family.

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Molly February 14, 2013 at 10:45 pm

One of my nephews had open heart surgery for TGA at CHW when he was born 11 years ago. For him it was spotted on the ultrasound before he was born so they knew he’d have to have the surgery ahead of time. He was an emergent transport from Madison where they’d planned on doing it to CHW due to where the surgeons and support staff were available when it came time for his surgery and we’re so glad they transported him as everyone up at CHW was wonderful and has been through all the years of his follow-up care. He’s healthy and thriving.

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Debbie February 19, 2013 at 8:13 am

My daughter was born with the same heart defect. She is now 8 years old and doing really great! She needed a pacemaker at 12 days old for some connectivity issues she had, and will have it forever, but she is really healthy and has “borderline normal heart function”. I have been through all of this, and would never want to relive it! I’m glad to see Ava looks so pink and healthy now! Our experience was at Boston Children’s Hospital btw. God Bless.

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Brittany March 21, 2013 at 9:16 pm

Amazing! I had a similar surgery done at 2 days old. I have Transposition of the Great Vessels. Now at 22, I have a beautiful daughter and one on the way :)

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Ericha Roeder May 13, 2013 at 11:23 am

Wow, thank you for this… We found out at 24 weeks that our little Henry has TGA and although reading this (and other similar stories) is tough, it does help prepare me for what is to come. Henry is due August 14th. I thank god that we found this in the untrasound and have had time to research and prepare for this huge event that is quickly approaching. Thank you for this.

~Ericha

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Amanda C January 28, 2014 at 11:52 am

How did Henry’s surgery go? How is he recovering? We are experiencing a very similar situation. We just found out at 23 weeks 4 days.

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Lois Vannicola August 4, 2013 at 5:39 am

Thanks for sharing. My grandson was also born with TGA on Monday July 29th. He had the surgery on August 2nd. I hope and pray he does as good as your little girl did.

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Mercedes August 16, 2013 at 9:12 am

Thank you so much for sharing your beautiful story! I just had an ultrasound yesterday because I had been having many aches and pains so they look to see everything was okay. Everything was perf ectly fine, but unexpectedly the dr discovered my babygirl has TGA :( I broke down and wanted to give up and started to blame myself what had I done wrong during this pregnancy and didn’t want to have her suffer. My husband told that god brought us there for a reason, because he didn’t want us suffuring or my daughter suffering the time she was born and everyone trying to figure out what was wrong. Thank god they got it in time and now my dr has her whole team ready and prepared for my babygirl. I thank god for showing me this sign and having me go in to the drs office yesterday, it gives me hope faith amd courage. Thank you so much for putting my mind at ease and letting me know that there is a possibilty of her surviving. God bless you & Ava♥

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Elena Savchenko October 11, 2013 at 6:06 am

Hello, mums!
I am from Ukraine (former USSR). I’d like to tell you our country can be famous not only with Chernobyl, but also of our doctors. My son was born 21 November 2012. About our diagnosis – TGA – we have known for 1 hour before his birth. At the age of 9 day our doctors made switch-operation. It was the sixth such operation done in our city. I know one american cardiosurgeon was invited to help with it. Now we are doing well. Sorry for my English. I want to say Dear Moms! Let’s hope our children will be healthy and luck to go through such terrible diagnos. In my country there is almost no information about such children. So I’m very happy to read your words “I had the same operation….” “my baby had the same” and we all are alive. Thank you very very very much!!

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KC November 26, 2013 at 6:15 pm

My son was born on Oct 12 and we found out then he had TGA. This story was one of many I found online that was reassuring- so thank you for writing it! Noah had heart surgery at three days old, had his chest tubes/breathing tubes/pacemaker wires out the next day, learned to eat within the next week and we were home when he was exactly 2 weeks old. After being in the PICU and cardiac unit at they hospital I am grateful he “only” had TGA- there are so many other defects out there that are worse and don’t have as high a success rate. Good luck to all the parents out there whose kids have TGA. Share success stories- somewhere out there are parents doing the same thing we did- looking for reassurance!

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Dawn January 1, 2014 at 6:22 pm

My son Drew was born in Jan 1999 with TGA and an ASD.He had the ASO when he was eight days old.He is now almost 15 and will have his second open heart surgery at the end of this month to replace his aortic valve.I thank God for him every day.He is amazing!

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Alicia January 3, 2014 at 3:23 pm

Im so glad your beautiful Ava has made it through so much adversity.
My husband was born with TGA 36 years ago. Of course we were concerned about out little fella, but we’re reassured when our 20 week ultrasound report was normal. Our midwife knew about my husbands condition.
I see though that you had several ultrasounds, and were not told that Ava had a congenital defect.
How is it that it wasn’t picked up before birth?
Can any other commenters relate? I have another ultrasound this week (at 33 weeks) to check growth and I wonder if I should bring up the heart issue again. Is it just not easily detectable?

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Brandi January 4, 2014 at 5:38 pm

Alicia, it wasn’t detected with Ava because they didn’t specifically look at her heart. We had the ultrasounds to monitor the placenta previa. If you are worried I would definitely let your doctor know. Ava truly is our miracle!!!! Thanks for all the wonderful comments.

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Amanda C January 28, 2014 at 11:50 am

Thank you for sharing your family’s story. I am 24 weeks and just found out today that my baby girl has TGA. We are overwhelmed and very concerned about what is in front of of us in the next few months as well a what is in front of her for the rest of her life. My heart is heavy and your story has lifted some of that weight. Thanks again.

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Katherine Boese January 28, 2014 at 11:01 pm

I am 34 weeks pregnant! We have known sinc 19 weeks that our baby has tga! She is due in march and the closer the day gets the harder it is not to worry and be afraid! I feel we are fortunate to know ahead of time what to expect! Thank you for sharing your story!! Its success stories like this that make the next few months look possible!!

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Adianys July 2, 2014 at 5:01 pm

Thank you so much for sharing your story. My baby was diagnosed yesterday at 21 weeks, and although I am scared I am thankful we found out as we now have a plan. I am awaiting amnio results to make sure this isn’t related to a chromosome abnormality, which so far I haven’t read any cases who have been related to one. That gives me peace of mind, the next 21 days will be the longest tho. This is all so scary, I am praying to God all goes well with my little one’s surgery in months to come. Thank You again for sharing! I hope your little one always continues to stay healthy.

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