Ethan
I am writing this letter to try and gain awareness about Congenital Heart Defects. These defects affect one in every 100 children. They can range from mild to severe, but at least half of these children will require surgical intervention during their lifetime. My son, Ethan, was born with congenital heart defects. He was born August 2, 2007 with heterotaxy, pulmonary atresia (he is missing the connection from his heart to his lungs), situs inversus (his body organs are on the wrong side of his body), transposition of the great vessels, ASD and VSD, MAPCAs (he has 4 small veins supplying blood to his lungs in place of his pulmonary artery), AV canal defect, and total anomalous pulmonary venous return (the vein taking blood from his lungs to his heart was malformed and unusable). These are all life-threatening conditions.
The day we found out about Ethan’s condition was at our 20 week ultrasound. My husband, daughter and I went to the ultrasound and were so thrilled to find out we were having a boy! The technician took a very long time looking over the ultrasound, and after a while of silence we could tell she was very concerned. She left the room and returned with a doctor to scan some more. The doctor gave us the most terrifying news we had heard up till then. Our little baby boy has a broken heart and his organs are all mixed up. The doctor told us that IF he made it through the pregnancy to prepare because it would be very unlikely that he would make it after birth. We were obviously devastated. We started doing research and seeing cardiologists at our hospital weekly to monitor Ethan’s growth and development. We received a bit more optimism from our wonderful cardiologists but we learned that we are facing a lifetime of pain, hospitalizations and heart surgeries and most likely an early death. When Ethan was born he was strong and able to breathe on his own! It was our first miracle! After his first month in the hospital of testing, medications, feeding issues resulting in feeding tubes, Ethan was struggling. He was not receiving enough oxygen to his body, therefore his little body needed help. The doctors said that they don’t really know what to do for him. They had an idea of a “band-aid” fix that they could perform. I went with it and Ethan had his first open heart surgery at a month old. Handing our tiny baby over to the doctors for surgery was one of the hardest things I had ever had to do. The entire day I was terrified, just awaiting news of whether or not Ethan had made it through the surgery. By the end of the day our prayers were answered and we were able to see him in intensive care. He looked awful hooked up to all of the machines, but at least he was alive! I was so happy! Throughout the next two months of hospitalization, we found out the surgery had actually made him worse. He was now getting too much blood flow to his lungs causing his lungs to flood. It was basically as if he was drowning every minute. After 90 days we were released from the hospital with oxygen, feeding tubes, monitors, and bags of medication to administer 4 times a day. I quickly learned how to take care of him and keep him going day to day. It was exhausting, but I loved having him home! After a month home Ethan started having constant fevers and I had to bring him back to the ER. They admitted him in congestive heart failure. He spent a month in intensive care before the doctors came to me for a discussion. They said that they do not know how to fix Ethan. The “ethical” thing to do is to take him home on hospice and let him die. I lost it. I couldn’t handle the thought of living my life without my son. I refused, just praying I was doing the right thing. We decided to perform a surgery that they said had little chance for survival. God intervened! Ethan survived the surgery and improved after that! After a month of recovery we were able to take him home again. He has had many hospitalizations after that. The common cold or flu would send him back to intensive care for a week or so. In addition to sicknesses, he would be hospitalized for numerous heart catheterizations to check and see any changes that were occurring and once to place a shunt after he went into SVT (his heart was racing way too fast). We are waiting for him to outgrow his last surgery – which will be soon – before we have to be readmitted and figure out another surgical step to take.
Ethan is almost 2 now, but this is going to be our life until he is between 5-10 years old according to the doctors. If he makes it that long, they say his heart will be useless. We will then be faced with a heart/lung transplant. We cannot do just the heart transplant because he does not have the connections to his lungs. We know these organs will be a very difficult thing to come across, and we might not even receive a heart/lung before Ethan earns his wings. I pray constantly that is not the case!
There are so many children like Ethan out there. Doctors are doing amazing things right now, but there are so many times that they just don’t know what to do next. That is why we need more research done! An average of 11 children die every day because of congenital heart defects. That number needs to drop drastically! We need you Oprah to help us spread the word and gain funding for research. If we have enough support (and who can give more support than you??), we can save so many children’s lives! Please be our guardian angel. Please help my son have a future to look forward to. I am begging you as a mother to get involved and save our kids. This disease is not something that they will outgrow. They will be bombarded with this until the day that they die, but together we can do what it takes to make a longer life for them now. Please give your support and spread awareness for congenital heart defects. This is a terrible disease that ruins the lives of not only our precious children, but the entire family and community that the child knows. Please help our cause, help our doctors find a cure, and help our children. Thank you!
Katrina Bradley (mom to Ethan, my little heart hero)