This is Congenital Heart Defect Awareness week(2/7-2/14) and I’m going to give a short story version of my brave little boy and how he has overcome so many obstacles in his short life. Many may not know as I don’t talk about it often but Gavyn was a heart baby. When he was born some tragic events happened. He almost passed away from his circumcision. During all of this from bleeding that would not stop he had to be air lifted from our local hospital to All Children’s Hospital in St. Petersburg, Florida. While in route to All Children’s he went into respiratory distress. We arrived at the hospital and were told he had not arrived yet. We panicked. I should say I panicked. Hubby was my rock who stayed calm, and didn’t break down. I needed that as I wasn’t fully functional. I wanted to trade places with Gavyn. I wanted to be the one bleeding to death. Not my newborn. This isn’t suppose to happen to little innocent children who just arrived on Earth. Where is my baby boy? Why isn’t he here? What is going on? All the why’s is all I was thinking. We were sitting in the waiting room and all we were told was Gavyn had arrived but you must still please wait. Please wait? Are you kidding me! Let me in to see my baby. It is a time that brings back some gruesome, horrific memories that just tears me up everytime. A pale newborn, who is almost in Gods arms and not mine, who was so lifeless. Your so helpless when you cannot be there with your newborn, who is very ill on the brink of death. After a long wait we were told to be prepared as he was in very very poor shape and they weren’t sure he was going to make it. We went into the PICU and there was my child, pale, hooked up to the ventilator, 3 IVs in his head an all over his hands and arms. I immediately broke down. I couldn’t handle it. We spoke to the crew who were helping keep Gavyn alive.
We were told his hemoglobin levels had been a 3. They are suppose to be 12 or above. Not very good. Bodies cannot tolerate low levels of hemoglobin. So we were told that from the large amounts of blood loss from the circumcision he was going to immediately need a blood transfusion. This is when I asked why did it take so long to be air lifted here and why did we beat the helicopter? We drove almost 60 miles away. We were then told he went into respiratory distress and he has a heart problem, but they weren’t to sure of what yet. Gavyn had many tests done and a doctor told us he was going to need immediate open heart surgery to fix this problem. We were told he had a very large Ventricular Septal Defect(VSD). Although we were told this congenital heart defect is common his was pretty bad. Here is the definition from Americanheart.org
“An opening exists between the heart’s two lower chambers. Some blood that’s returned from the lungs and been pumped into the left ventricle flows to the right ventricle through the hole instead of being pumped into the aorta. Because the heart has to pump extra blood and is overworked, it may enlarge.
If the opening is small, it doesn’t strain the heart. In that case, the only abnormal finding is a loud murmur. But if the opening is large, open-heart surgery is recommended to close the hole and prevent serious problems. Some babies with a large ventricular septal defect don’t grow normally and may become undernourished. Babies with VSD may develop severe symptoms or high blood pressure in their lungs. Repairing a ventricular septal defect with surgery usually restores normal blood circulation. The long-term outlook is good, but long-term follow-up is required.
People with unrepaired ventricular septal defects are at risk for getting an infection of the heart’s walls or valves (endocarditis). After a VSD has been successfully fixed with surgery, antibiotics should no longer be needed. If surgery or other procedures do not completely repair the VSD, the person is still at risk for developing endocarditis. Please see the section on “Endocarditis” below to determine whether your child will need to take antibiotics before certain dental procedures.
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So back to him need this emergency surgery. I immediately told this doctor I wanted a second opinion. The head pediatric cardiologist came and spoke to us saying there was absolutely definitely NO way they could perform surgery as he lost so much blood from his circumcision that he would not live if they did. I won’t get into much more details but weeks past and Gavyn made it through this. He would now need to be on medications for his heart defect and high blood pressure. Gavyn got better and we got to leave. A week later we were back at All Children’s because I noticed Gavyn was very pale and skinny. He wasn’t gaining weight and now we were back for another week of testing. He was working so hard eating(I was breastfeeding) that he was burning so many calories and losing weight. I had to add Glucosamine powder to his bottles of breast milk and had to stop breastfeeding. So again Gavyn got much better and we were home. The next 6 years was testing and Echocardiagrams. Every year his doctor told us not much change but the hole had closed a little. September of 2008 was a year I’ll never forget. We went to his yearly appointment and his wonderful doctor told us…well, I have some bad news. My heart sank. I’m sorry to tell you the only place I’ll ever see you is Wal-mart. I will never see you here again. His heart defect is completely healed and he will NEVER need open heart surgery. He has outgrown his large VSD and it’s really a miracle. I hugged Gavyn so tightly, and his doctor. I couldn’t believe the hole had closed. This mom had the biggest smile ever in all her 28 years of life. That is a fact!
So that is a short story of what I went through for the first 6 years of Gavyn’s life. Stressful but makes me so happy and one day I hope to speak to families who have children with a VSD. I’ve done so much reading on it over the past 7 years that I would love to bring awareness and hope to other families. This week is Congenital Heart Defect week and what a better time to tell everyone my story and my journey as a mom with a child with a congenital heart defect that overcame everything. Gavyn you are such a strong boy. You’ve never stopped at anything, and you did everything in your first months of life to stay alive. You stayed so brave, yet were so frail. You are such a big boy now that never was small and weak after you were better. You grew and grew. Your bigger than most 7 year olds. Not typical in children with a large VSD like you had! And you my son are my everything. The strongest, most courageous boy ever. I love you sweetheart!
Wow, I didn't realize that the national awareness week was at that particular time, I knew February was National Heart Defect Awareness month. It is so amazing to me because my daughter was just born on the 14th of Feb, and she has a rare CHD called Truncus Arteriosus. Thanks for sharing your story, and for making others aware of the prevalence of CHD. It is certainly something I gave little thought to before my own daughter was diagnosed. Now I think of little else!
Oh boy all of that had to be really scary for you and your family! That's the most horrible thing to happen to a new mom! I'm so glad he beat his odds!!!!!!!
If he would of had to go through heart surgery later in life, that would have put the worry right back on!
My son's were medical mysteries to the doctors to this day. They couldn't tell if they had bacterial, or viral infections. With both of them antibiotics would work, then not work. Mica's staph infection was in his neck. His neck kept getting bigger and bigger. They were worried about his throat closing. We think he got it through an ear infection on the same side. They both had sky rocketed white blood cell counts, and fevers. We're lucky Isaak never had any hearing or brain damage from his meningitis.
What an amazing story AND miracle ! I’m so happy for you guys :] This story really warmed my heart, he is lucky to have such amazing parents and definitely a mom like you.
Thank you for commenting. He is my miracle that is for sure. Gavyn’s dad always said I knew he would make it he is such a fighter, I wasn’t so sure. Hoped, prayed, and prayed some more. Thank you for the sweet comment, that brightens my day.