It was July of 2018…I was in my last term of pregnancy. I found out about Dawan’s heart defects at about 35 weeks. Knowing about his health in the last few weeks of pregnancy, I felt lost, scared for my baby, and just couldn’t think. I was stressing about whether he was going to be okay. I was going to appointments every week at the high risk doctor and they told me I had to be induced due to his condition. I never made it to my induction date and I delivered at 37 weeks, still feeling scared and worried. When Dawan was born, his face was blue. When they brought me to see him it was hard to see past all the tubes and wires and oxygen all hooked up to him.
Of course, the care I received for him from Wolfson Children’s Hospital was epic. Dr. Ettedgui was there with his team updating me on Dawan. After a long few weeks in the NICU, I got a chance to bring him home before surgery. We were going to appointments every week and meeting with cardiologists about his defects. By the time a month had gone by, around the end of August, it was time for his heart surgery. During this surgery, he received a heart shunt. That was a very difficult time not knowing and wondering if my son was going to make it. They kept his chest open and had to take him back to the OR within a few hours after the 1st surgery.
It was very difficult to hear the plans of what the team was going to do. There were options and decisions that had to be made. As a young mother, I felt lost. I felt like I did something wrong. I was asking myself the question “why me? why my son?”
I never had to make these types of decisions before and I didn’t know if I made the right decisions or not for my only son.
When I heard about the support group, The Healing Hearts Project, I felt relieved. We received meals on surgery day and a couple of people came around and talked to me for support. This made me feel like I wasn’t alone anymore. It helped a lot. When I felt lost or had questions, the group was there; the support was there all the time from people I didn’t even know that I now called my heart family. I learned I have a new family because they welcome you and your warrior with love and care and support. This is what everyone needs during this tough time.
You may be wondering, how is it going now? Of course, Dawan has had other surgeries; the Glenn, the Fontan, and pacemaker surgery. During these other surgeries and journeys, as I say, I turned to my heart family for encouragement and I always have faith in the man above to keep me focused.
My wish for local families affected by CHD is that they never give up their faith, they never feel alone in this journey, they keep their head up and they take it one day at a time. I hope they always reach out to another person who was once in their shoes and I guarantee you everything will be alright.
My wish for the ones who lost a child or loved one to CHD is that they will always be remembered here on this earth, that they are able to see that loved one looking down on them, and that they remember their angel is always there to keep pushing them through each day!