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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