Greta (Tetralogy of Fallot, Pulmonary Atresia) - Louisiana Pediatric Cardiology Foundation

Greta (Tetralogy of Fallot, Pulmonary Atresia)

Our daughter, Greta was born on May 3, 2002 weighing 6 lbs, 7oz. I had a very normal pregnancy and birth. Everything seemed fine, and we were so happy to take her home to meet her big sister, Macy. Just one month prior to Greta’s birth, my sister’s 5 month old son died of spina bifida. It was such an awful time for her and our family. We were all so relieved that Greta was born healthy. She was a wonderful baby. She was alert, happy and thriving. She went for her routine check-ups, received her immunizations and was right on target with everything. I had no concerns at all. A couple of days before turning 4 months old, Greta got her first cold. I decided to take her to the pediatrician at the last minute because we were leaving for a beach vacation for a week. It was the Friday before Labor Day, August 30, 2002, a day that is ingrained in my memory. My pediatrician was out of town, so I had to see someone I had never seen before. I was very preoccupied with getting everything packed for our trip, and I never in my wildest dreams could have imagined something would be wrong with my baby. The pediatrician, Dr. Traci Brumund, listened to Greta’s heart, examined her, and said that her cold wasn’t too serious. Her ears and throat looked clear, but there was one thing that concerned her. She noticed that Greta’s lips looked a little blue. This resulted in doing an oxygen level test. She did the test 4 times and each time her oxygen level was between 70-72. This set off some alarms since a normal person’s oxygen level is usually 100. It wasn’t until after finding out these results that she listened to her again and could hear a very slight heart murmur. As I was sitting holding Greta in my lap with my three year old coloring next to me, this sweet doctor, who had just met me, had to tell me that my precious baby girl had a serious heart defect. You can imagine my shock and disbelief. For 4 months I thought my baby was perfect. I think my exact response to her was, “There must be some mistake. I’m her mom, and I would have noticed if something was wrong with her!” She immediately called her husband, Dr. Michael Brumund, who is a pediatric cardiologist, to see us right away. I felt like I was in a dream, and I barely remember calling my husband at work to tell him the awful news and to have him meet me at the cardiologist’s office. Dr. Brumund, who would soon become like a member of our family, did several tests on her and diagnosed her with Tetralogy of Fallot with Pulmonary Atresia. This meant that Greta had a large hole in her heart (VSD), a thickened right ventricle (hypertrophy), and an overriding aorta, but the worst part was that she had no pulmonary artery. We would then learn that it would take multiple open-heart surgeries to correct this. We were devastated! How could this be happening to our seemingly healthy baby? Almost all children that have this heart defect are diagnosed either in utero or right after birth. They have trouble eating, especially breastfeeding, are very irritable and have episodes of cyanosis (which is a bluish tint to the skin, lips and fingernails). Greta did not fit this profile. She was such a happy baby. She rarely ever cried. I breastfed her exclusively. Even though she nursed very quickly, she was gaining a significant amount of weight. She was even considered chunky. The only cause for alarm was her blue lips which was due to the cold, but as soon as her cold went away, her lips went back to the normal color. She had no symptoms. Her murmur was so slight that it was easily undetected. We discovered that she had many collaterals that multiplied and did the work for the pulmonary artery. It was truly by the grace of God that she was functioning as well as she was.

greta-1Just two weeks after Greta was diagnosed, we went to Children’s Hospital in New Orleans for her first open-heart surgery. She was 4 months old. This surgery would not be a repair, but a temporary fix. On September 16, 2002, the surgeon put in a shunt to help the branches of the pulmonary artery grow. He would not be able to close the hole yet because it was helping her survive at the time. Everything went really well, and we were released from the hospital after a two and a half week stay. When we returned home, Greta was growing and thriving. Since this surgery was not a repair to her heart, she was much more susceptible to getting sick. She did suffer with a few problems, salmonella poisoning and Rotavirus, but recovered well from it.

Eleven months later, we were back at Children’s Hospital in New Orleans. Greta was having a heart catheterization to coil up all of those extra collaterals she had. We were told that she would be able to go home for a few weeks before her next surgery. Unfortunately, she wasn’t doing too well after the heart cath. Despite her being on full oxygen, her oxygen level remained in the high 60’s. She was really dependent on those collaterals to help her survive. So on August 25, 2003 at the age of 15 months, Greta had her second open-heart surgery. We knew this would be a pretty long surgery because they were closing up the hole, removing the shunt and putting in a conduit, which is an artificial pulmonary artery made from gore-tex and tissue from a cadaver. The surgeon came out to see us and told us that the surgery was a success. We were so relieved! He did say that they had not yet closed up her chest and were debating on whether to keep it open for a day or so since she had a bit of swelling. We called everyone and told them the good news and thanked them for their prayers and asked them to continue to pray. Thinking that the danger was over, Greta’s grandparents left planning to return the next day. While my husband and I were sitting alone in the waiting room anxiously waiting to see her, unbeknownst to us, Greta was fighting for her life. Upon returning to the operating room, the surgeon and the anesthesiologist administered a heart medication that is needed after surgery. Not long after she received the medication, they noticed that her feet and face started turning red. She was covered with a warming blanket at the time, and when they removed it, her entire body was red due to a severe allergic reaction to the medication. Her blood pressure plummeted and she coded. Trying everything to stabilize her, they quickly removed and reinserted the ventilator, and performed CPR with her chest still open. Finally, after about 8 minutes, she stabilized. The doctor then came out and told us what had happened. He explained that this was such a freak thing and rarely ever occurs. He expressed his concern that Greta might have suffered some brain damage due to the lack of oxygen. He told me he would not sleep well until he knew for sure. Maybe I was in denial, but I just knew in my heart that she was going to be okay. She didn’t wake up until 4 days later. She opened her eyes and looked at me and very quietly said, “Mommy.” I immediately started bawling. Working with the limited vocabulary of a 15 month old, I needed to see for myself if she was really okay. I said, “Greta, show Mommy where your eyes are.” Bless her little heart, with wires coming out of everywhere, she lifted her hand and pointed to her eyes. Then I would go on to have her point to her nose, ears, mouth and hair. She got everything right. With tears of joy streaming down my face, I ran out to find her doctor and told him she was fine. About a week and a half later, we were released. Greta did extremely well when we got home. She was thriving and developing just as she should. She was very active and loved to climb on everything! She was even able to keep up with her big sister. We were living a normal life and felt so blessed. She was getting regular check-ups with Dr. Brumund at first every 3 months, then every 6 months. We were told that if everything continued to go well, her next surgery would be 7-10 years away. We were elated!

greta-2Two and a half years after Greta’s second surgery, we went for a routine cardiology check-up. We were thinking everything was fine. She was doing so well. She had just finished playing soccer for the YMCA, and she was also taking gymnastics. Her check-up revealed that her conduit was leaking and was significantly blocked. She also had two aneurysms that formed on the conduit. We were floored! Yet again, Greta had no symptoms. She should have been very out of breath and not feeling well. We were thinking we had at least another 5 years before her next surgery, and instead we were deciding where her surgery would take place. Greta’s third open-heart surgery was in Boston at Children’s Hospital on February 8, 2006, on Macy’s 7th birthday. Greta was three and a half years old. I was 6 months pregnant at the time with my son. We were quite concerned about the aneurysms rupturing, but we knew we were in one of the best hospitals in the world. Dr. Pedro del Nino was able to successfully replace the conduit with a very large one without any complications. She did have to receive many blood transfusions because she was unable to receive the medication that caused the allergic reaction during her last surgery. Greta was released from the hospital just 5 days later. When we arrived in our driveway 6 days after her open-heart surgery, she perked up and said, “I am going to ride my bike now!” It is amazing how resilient children are. She continued to do really well with a few mishaps along the way. Three months after her surgery, when my son was just a week old, Greta developed a staph infection in her knee that required a 5 day hospital stay. Then three months after that, she went into anaphylactic shock at the doctor’s office after receiving her immunizations. It was then that we discovered she was allergic to gelatin which is found in every type of shot. This allergy is extremely rare. She can no longer get any type of immunizations or shots, which is a little scary.

Today, Greta is a very healthy, happy, sweet and active 8 year old. She is a straight A student. She still takes gymnastics and is on a musical theater competition team for dancing and singing. She loves spending time with her family and friends and doing everything kids her age love to do. Unfortunately, she is still not done with her surgeries. She has at least one more, maybe two. But we are praying for just one more! Her final surgery will take place when she reaches full growth at which time she will receive an adult sized conduit. All of the things that Greta has endured, have made her so much stronger. She is a fighter. She handles everything really well, and she never asks why this had to happen to her. She has been through a lot in her short life, but I know God has an amazing plan for her. We thank him every day for this special child he has given us. We are so fortunate to have Dr. Michael Brumund as her doctor and the wonderful staff at the Louisiana Pediatric Cardiology Association. We are also so grateful that we were able to go to the incredible hospitals out-of-town and out-of-state to get Greta the best treatment she needed. We feel blessed to be a part of the LPCF and hope that every child with congenital heart disease can get the help that they need.