*This is a very true story. Tissues might be needed. It was difficult to write this, but it is something that helps me express what had happen with my son and his short journey. Please, just take caution when reading.*
There are a lot of ‘Mom Blogs’ out in the web. Some talk about how to take care of a child or their experiences with their child’s first achievements in life. But I haven’t seen very many that talk about the experience of having a child with a heart disease. Let’s just say that it’s very much an emotional rollar coaster.
Well, that’s what it was for me. My son was diagnosed with HLHS (Hypoplastic Left Heart Syndrome) when I was 22 weeks pregnant with him. Basically, HLHS is when the left side of their heart is either underdeveloped or never formed. Once he was born, he would have to go into surgery within the first week of life.
Altogether, he would have to go through 3 major surgeries with in the first 3 years of his life. Now, I was 18 when I was pregnant with my son, Liam. Image being me at 18, and being told that there was a very big change that he wouldn’t make it. Liam’s everyday life would be either life or death.
The happy family that my fiance and I imaged had changed. We didn’t know if he would make it to his first birthday. We had so many unanswered questions. Would he be able to play sports when he gets older? Would he need a heart transplant in the future if his starts to fail? Or the big question that we wanted to know: Would he ever make it home from the hospital?
Because of how serious his disease was, we weren’t able to have him, in our state. We were recommended to go down to Boston Children’s Hospital. We were told that they deal with congenital heart defects everyday. It made me and our family feel a lot better about having Liam there.
Once Liam was born, he was the most beautiful baby boy that I ever laid eyes on. You couldn’t see that there was anything wrong with him, but on the inside, there was a struggling heart that we would of never noticed.
As soon as I hear him cry, I started to cry myself. They cleaned him up and gave him medicine, to keep the values from closing. We could only hold him for a minute before they took him up to where he needed to be.
I finally got to hold him longer, later that day. I wanted to keep holding him because I knew that once he had his surgery, it would be a very long time until we were able to hold him again. They planned for his first surgery to be on June 27th, 2016, 3 days after his birth.
My fiance and I spent the entire day with him, holding him, getting as much closeness as we could. Until, the morning of his surgery came. We walked down with him, until we got to the point we weren’t able to go past. We both kissed his and held his little fingers. Praying that god would watch over our little boy.
During that day, we got out of the hospital, trying to get our minds off of the fact that they were doing surgery on our son. I wanted to wait all day, but my fiance and I agreed it would be best to go out and get some fresh air. We got frequent updates, while Liam was in surgery. It made me feel better that someone cared enough to let us know that everything was going smoothly and that they would keep us posted until he was our of surgery.
Once they called to let us know that he was doing great, they told us that he was all set to see visitors. I was nervous and scared to see how he looked. Even when we got closer to his room, tears already started to pour down my face.
As a parent, you never want your children to go through surgery or be hooked up to anything. Seeing Liam for the first time out of surgery, was life changing. His chest wasn’t closed, they keep the chest open for a few days to make sure everything is working out fine before they close it. Every time I would go to see him, I asked that they covered his heart, just when I was in there. I don’t know why, but I felt uncomfortable.
As weeks went passed, they finally closed his chest and slowly started to take him off some medication and his breathing tube. We were finally able to hold our son again, after about 4 weeks from his surgery.
We thought that things were going great, he was able to leave the NICU and move over to what they called was ‘The Floor’, meaning that Liam still needed nurses, but not 24/7, like he did in the NICU. The doctors said that once he was able to start eating from a bottle or breast and a few other things, he would be able to go home.
Day 2, of being on ‘The Floor’, was the most horrible day of my life. The nurse had come in to give Liam his medicine and he was being fussy, so she suggested that I pick him up and rock him. All of a sudden, my worst nightmare had happen. He stopped breathing in my arms.
The nurse took him and pressed the code blue button, 7-8 other hospital staff rushed in to help, they took him back over the NICU. I followed them, shocked and frighted. My fiance rushed over to the hospital, they wouldn’t allow both parents to stay in the room together, so he had to stay at a place that was a mile away from the hospital.
My hands wouldn’t stop shaking. I didn’t know what to do, they had a nurse stay with me until my fiance got there. All I could say was, ‘he stopped breathing in my arms.’
They did CPR on him for 45 minutes until they were able to get on bypass. They didn’t know what happened. They figured it was a blood clot that blocked blood from reaching his heart. The told us that they were going to try and take him off bypass slowly and hope for the best, but if he was still on it after a week, there was a good chance that Liam wouldn’t make it.
During the time he was on bypass, Liam had brain damage, from getting CPR for too long, kidneys and liver were starting to fail. We ended up sitting down with a few doctors and his surgeon. We also got our immediate family to come up, for the support. They said that once we can get him off bypass, that they would be able to determined if he would still have brain activity, but by the looks of what they were trying to read, he had little to none brain activity.
My fiance and I looked at each other and prayed that god wouldn’t take Liam from us. He did. On July 23rd, 2016 at 4 in the morning, our son had passed away. When they took him off bypass, he was doing fine, but slowly started to decline. My fiance, his mother, my mother and I, were with him when he passed. I held him until his heart stopped beating.
Everyone I knew, their baby got to come home in their car seat, but Liam never even left the hospital. He didn’t come home in a car seat. He came home in a box. Every mother’s worst night mare.
It was really hard to write this, but I think it’s time that everyone knows that not every baby born in this world is perfectly normal. I rather tell people my experience than let every mother or soon-to-be mother think that everyone’s child is born healthy.
Because my son wasn’t born healthy. His heart disease was something that not even doctors know how it was caused. I’ve googled it thousands of times, no one know’s why HLHS happens or any congenital birth defect.
This year will be two years that Liam has been gone. I’ll never get to see him on his first birthday or see him walk or talk for the first time. He was two days shy of being a month old.
But there is one thing that I want to let everyone know. Whether your child was on this world for a day, month, or years, you can’t just get over it. People think that because Liam wasn’t even a month old, that I can just get over it.
To this day, I still cry about him, not as much as I first did, but I do still cry about him. I always will. He is my little Simba and I miss and love him so much.
On a happier note, Liam gave us a surprise from up above. We were blessed with our daughter, Isabella on October 25th 2017, our rainbow baby. I believe that he knew we were ready to be parents, as cheesy as it may sound, and gave us our healthy daughter.
Every year on his birthday, we release balloons, in honor of him. In honor of our heart warrior, our little Simba. Now, our Simba is looking down and watching over his little sister from up above.
Liam Michael (June 25th, 2016 – July 23rd, 2016)