Tate’s CDH Story

Tate was diagnosed with left-sided CDH very early on at just 15 weeks pregnant. Tate was considered mild/moderate CDH during my Pregnancy as ultrasounds could never confirm liver up but the MRI did. Our pregnancy was full of lots of unknowns. Tate was scheduled for a C-section on March 27th but on March 16th Tate decided he couldn’t wait any longer. Labor was very quick and very scary for us. I remember being wheeled into that OR room and telling my nurse “This is too much, I’m terrified.” Tate came very quickly nothing quite prepared us for not being able to see or hold your baby after birth and to hear nothing but silence. Knowing my baby was here and I couldn’t so much as to see him was soul-crushing. Tate spent 2 months at Children’s Mercy in Kansas City. Tate didn’t get his repair until day 12. Held for the very first time on day 11. Chest tube placed on April 6th for pleural effusion. Failed extubation on April 3rd. Successful extubation on April 23rd First bottle on April 23rd. The first latch was on April 25th. He then moved to the big boy room on May 9th. Discharged May 16th. Tate was discharged on an NG tube (never needed to use it) and on a quarter liter of oxygen constantly Tate was taken off oxygen on July 23rd and has remained off oxygen! Tate has 2 older sisters 9 and 2 and an older brother age 6. Tate’s 2-year-old sister didn’t understand much of what was going on. Tate’s 9-year-old sister however was very worried about her brother we didn’t tell them until the day I went into labor because we didn’t want them worried we simply explained Bub was sick and would need help for a while. We showed other pictures of babies with his condition this was very helpful for them to see that Bub will look different than how they remember seeing sissy. The oldest sissy cried often and called us from school daily asking about him. This was really hard for her. The older brother didn’t seem to know how to handle things. He didn’t realize that talking with u was a good thing, or that Tate was diagnosed with left-sided Congenital Diaphragmatic Hernia (CDH) very early on at just 15 weeks pregnant. Tate was considered mild/moderate CDH during my pregnancy as ultrasounds could never confirm liver up, but the MRI did. Our pregnancy was full of lots of unknowns. Tate was scheduled for a C-section on March 27th, but on March 16th, Tate decided he couldn’t wait any longer. Labor was very quick and very scary for us. I remember being wheeled into that OR room and telling my nurse, “This is too much, I’m terrified.” Tate came very quickly. Nothing quite prepared us for not being able to see or hold our baby after birth and to hear nothing but silence. Knowing my baby was here and I couldn’t so much as to see him was soul-crushing.

Tate spent 2 months at Children’s Mercy in Kansas City. Tate didn’t get his repair until day 12. I was able to hold him for the very first time on day 11. His chest tube was placed on April 6th for pleural effusion. Failed extubation on April 3rd. Successful extubation on April 23rd. The first bottle was on April 23rd. The first latch was on April 25th. He then moved to the big boy room on May 9th. Discharged May 16th. Tate was discharged on an NG tube (never needed to use it) and on a quarter liter of oxygen constantly. Tate was taken off oxygen on July 23rd and has remained off oxygen!

Tate has 2 older sisters, 9 and 2, and an older brother, age 6. Tate’s 2-year-old sister didn’t understand much of what was going on. Tate’s 9-year-old sister, however, was very worried about her brother. We didn’t tell them until the day I went into labor because we didn’t want them worried. We simply explained Bub was sick and would need help for a while. We showed other pictures of babies with his condition. This was very helpful for them to see that Bub will look different than how they remember seeing sissy. The oldest sissy cried often and called us from school daily, asking about him. This was really hard for her. The older brother didn’t seem to know how to handle things. He didn’t realize that talking with him was a good thing or that we couldn’t hold him every time we went to see him. This is your reminder that these babies are wonderful, and your life will look so different years from now! It’s okay to get discouraged, but please don’t stay there!!