JessicaM

Hello,
I am 28years old. My CDH Survivor will be 8 on August 2nd. My story started at 19 years old pregnant with my first child. A few months later i turned 20. When I was 30 weeks pregnant i went in to have a 3D/4D ultrasound and immediately i noticed something wasn’t right. The tech would not speak and she kept going over the same spot. Though at the time i had no medical background i knew something was wrong. Next thing i knew i was having a dr appointment and it was confirmed my son had a herniated diaphragm on the left side. We were referred to UCSF specialists and had xrays done. They told me in our initial meeting a mixture of things. It felt like i was being reassured but not at the same time. I remember not knowing how to feel. So i finally asked, “so what does that mean? What are his chances of making it?” And they said 50/50 chance i said so is it a good 50 or a bad 50? And they said they didn’t know either way that they wouldn’t know anything til he was born. I asked what my other options were...they said abortion...i said well I’m not going to take his only chance and I’ve come this far. At birth he was taken from me immediately and intubated. I didn’t get to see him for hours. When i finally saw him he had so many tubes and things it was scary. He wasn’t allowed to eat on IV nutrition. He had surgery shortly after birth and our first sign of hope was given. His repair was small enough to use his own stomach muscle. I was relieved but still worried sick. I stayed up day and night for weeks until we could finally go home. The first time i held him i cried tears of joy and tears of sadness i could not believe something so horrible would happen to something so precious. Shortly after he was put an NG tube and we worked day and night on getting him to tolerate food but his weight just wouldn’t stay up. He would vomit after every feeding and he would get too tired to finish a bottle. One day Finally we were on track to go home. During his hospital stay we lived in hospital waiting rooms at the bedside and in closets with beds they provided us hours away from home. We had no family there. Occasionally someone would come up and visit but it was sooo hard. We finally went home and life continued to be hard. I felt like a failure, every meal he would vomit, then there was severe constipation from his diet. It was like the nightmare had never ended. Gradually things got better over time. His vomiting stopped. But getting him to eat was frustrating and at times i felt like the worst mother. No one understood what we were going through everyone just thought i was a bad mom who didn’t feed her child. The day he told me he was hungry for the first time i will never forget and i remember i was so happy i cried. And i asked him what he wanted. I told him you can have whatever you want and I’ll make it. Up until last year i thought we were done...life finally felt normal he was eating not great but okay compared to the past....then the worst hit us. We had a follow up and his weight was less than acceptable. Meal supplementing started again and i cried. I cried for weeks because the thought of him having to have a tube again was just not feasible. This child had struggled with his own self image for as long as i could remember because of his scar. He would never let people see his stomach. He was absolutely embarrassed by it and he had just gotten comfortable with the scar from his surgery. Over the next six months were rough we worked hard at eating and weight gain. When we saw the specialist again he was just where he needed to be (bare minimum) to not worry. We went back to yearly visits and when i say the nightmare is never truly over it really isn’t.