My name is Jessica and I am the proud mama of two beautiful boys, Theo and Christian.
All babies are unique, but my story is super rare. I ALWAYS dreamed of becoming a mother but never imagined this would be my journey.
With my eldest son, the trauma started when I found out at 28 that I had PCOS. From fertility treatment to loss, then pregnant again, I found out something was not quite right in my pregnancy.
Early on, I found out my baby had a condition called Gastroschisis (gast-roh-SKEE-sis), which according to Kids Health (2019) is when “a baby is born with the intestines sticking out through a hole in the belly wall near the umbilical cord. Sometimes other organs also stick out. It’s a life-threatening condition that needs treatment right away.”
When my eldest son Theo was born, my husband was told at four hours old that he may not make it. He was taken to surgery because his condition was very complex. In Theo’s first month of life, he received many critical blood transfusions and was treated for E.Coli and NEC.
He was on a respirator on and off for two months and I saw him receive an emergency intubation. After his hospital stay, I thought things would be “normal” once discharged, but they weren’t. They were harder.
Theo wouldn’t sleep or eat. Any time he slept for more than four hours, the trauma of the hospital came rushing back to me. When he would eat, he would vomit more than he consumed. I wasn’t coping—at all and felt like such a failure. He was termed “Failure to Thrive” and received a g-tube (feeding tube) the day after his first birthday. Then once his g-tube was inserted, any complication that could have happened did.
I was barely coping and the last thing on my mind was having another baby. Well surprise! I got pregnant—naturally! I didn’t know how I was going to take care of a baby with all of Theo’s needs, but felt so blessed and excited to have a healthy pregnancy.
At 20 weeks, I found out that baby two would also have Gastroschisis. Gastroschisis is not genetic and we are one of the rare families in the world to have two babies with this condition.
Feeling devastated would be an understatement. We hoped Christian’s story would be less complex than his brother’s. Unfortunately, Christian had a complex case and was on a respirator for over six weeks. I could not hold him until he was almost two months old.
What I learned from being a mother of two very sick little boys is that parents need to be thoroughly supported. I went through and still suffer with PTSD and did so alone. I don’t believe that things happen for a reason, but I do believe that you get accustomed to your experiences, no matter how grim.
It’s important for me to use my experience to make a positive impact in the lives of others. I believe it is vital for me to share my story and to let other parents who are going through similar experiences know that they are never alone. For me, this has been the greatest struggle and it is something I am still grappling with to this day. For this reason, along with a dear friend, we created BeyondtheBeads–two SickKids Mamas, Advocates, and Educators.