Levi’s Story
Levi is our second son. Our second child conceived naturally and our second son with Urea Cycle Disorder – OTC Deficient. The journey continues…
Okay so, this post is going to be lengthy, and something I rarely talk about simply because I don’t want opinions but, I feel like it’s necessary to share this story. In hopes it helps someone else feel less alone.
This is not easy. It never was easy but it’s right! So here goes…
Our first son Brady was lost to Urea Cycle deficiency – OTC deficient. We didn’t know he had this. We didn’t know I actually have this. We didn’t know it is generally fatal in baby boys. We didn’t know that his journey to heaven would be a painful one. Not just for us… but for him. He suffered!
Brady was 6 days old when we started to notice he wasn’t acting normal and it took 48 hours of his short life for him to pass. That’s 1/4 of his life that he struggled, suffered and was put through the ringer. At infancy! He suffered with Cardiac arrest, seizures, dialysis ( with IVs through this head), pain, pokes, prods and ultimate brain death. Our first born little guy suffered.
We found out after his passing that each time we got pregnant naturally we had a 75% chance of having a healthy baby. This meant that 25 % of the time we risked the same outcome.
25% is a high percentage but 75% is so much higher. And the only way to achieve higher odds is to commit to IVF with genetic testing ahead of time. This process is lengthy, VERY costly ( significantly more than traditional IVF) and you could end up having no healthy embryos or get shut down at the beginning, finding out a test could not be created to test your specific embryos and deficiency. So, following Brady we decided to try naturally and pray our baby was one of the 75%.
This is Levi’s story.
Levi is our second son. ! He was SO wanted, planned and the odds were in his favor to be healthy and thrive.
We did a CVS test at approximately 13 weeks ( it cannot be done before this) to determine the sex and if this baby possessed this genetic mutation. We found out about a week later that this baby was a boy. That takes our odds down to 50%. He either does or doesn’t have the issue. About a week after that call we got the call that sadly, our second little guy was going to join his brother in one way or another.
I can’t explain to you what this call felt like. Deep, helpless pain and conflict!
However, the one thing we knew we couldn’t do was put this baby through the same suffering as his brother. And, I know someone will pipe in and say they that in terminations, babies do suffer. Trust me, I’ve done the research. I am not denying this. But putting him through 10-20 mins of pain vs 48+ hours of it…what would you choose? Be honest. No matter your stance. Take termination off the table. Just pain. Would you stand there and watch your child suffer without being able to do anything to help them? Knowing the end result will be the same…for 2 days if you could choose 20 mins? You wouldn’t!
It took a couple of weeks to get an appointment at the hospital. We had to go out of the area but were referred by McMaster Children’s Hospital to the out-of-town Hospital. And we stayed there for 3 days. I was admitted and cared for afterward. Our son was born and went to see his brother on the very same day, April 20, 2016. We named him Levi because it means together or united and we knew that he would be. He would be united with his brother in the company of Jesus, safe and free of pain.
My journey was not free of pain. I was not with my two babies. My body thought I had a baby so milk came in, bled for weeks, and mentally was exhausted and FULL of pain. In less than a year we had loved and lost two babies. Both that were wanted, planned for and loved.
But, based on the 2 choices we had (keep him and let him suffer the same fate as his brother or save him that extended pain and suffering and let him go be with Brady now), we made a decision based on what, we feel, was best for him!
The decision to terminate my pregnancy with Levi was not to avoid the pain for me. I experienced and continue to experience a significant amount of pain. It was also NOT birth control. We wanted him. This was a parenting decision. As Levi’s ( and Brady’s ) mother, I, together with my husband ( Levi and Brady’s father) made the kindest choice we could make.
That said, Levi taught us that while we felt (and still feel) like we made the decision with his best interest in mind, we could not and would not be forced to make that choice again. He really did break our hearts. And, life after Levi was extremely lonely. Even though we made the decision together, I was the only one who knew and felt him. So, while my husband and our families grieved for what would have been, I lost a part of myself.
Levi taught us that even though IVF was more time and money and potential heartbreak, it was the only choice. Just like his brother, his story and his life gave us so much. And following Levi, we would go on to begin IVF with genetic testing. But, of course, the journey doesn’t end there…
To be continued in next Friday’s post.
We love you Levi! We let you go in the name of love.
