April is CDH Awareness Month

I found out at 12 weeks that I was pregnant. We were shocked but excited. As an early Mother’s Day present I found out at 16 weeks that our sweet little caboose was another boy (youngest of three). After two healthy pregnancies I had anticipated another normal ultrasound but it was at our 20 week ultrasound that I heard the letters CDH – Congenital Diaphragmatic Hernia.

We saw many specialists, had a fetal MRI, and numerous ultrasounds to confirm the extent of the diagnosis: left side CDH. We wanted the best care for our sweet boy.

I went into labor at 36 weeks and was mini jet lifted from Bolivar to St Louis Children’s Hospital. I had extra amniotic fluid and they were unable to keep Brian on the monitors during labor (he kept swimming away), so we opted to do a c-section to keep him safe. I didn’t get to see him until he was approximately eight hours old, but I did get to hear his first and only cry at birth. He was placed on ECMO at four hours old due to severe pulmonary hypertension. The nurse told me he was one of the sickest babies in the NICU.

On his fifth day, Brian developed a brain bleed due to complications of ECMO and his good lung collapsed. He was unable to survive off the life support.

I connected with On Angels’ Wings before Brian was born and was supposed to get maternity pictures but unfortunately did not get to do them since I went into labor early. Once he arrived, OAW helped arrange a photographer that came into the hospital to do a session with our family when we found out that he would not survive.

After losing Brian, I made it a goal to help spread CDH awareness. I have made numerous friends in the CDH community of both survivor and angel families. I’ve also sent many of those families information about OAW. Losing him broke my heart, but made me a stronger person overall. I do many things in memory of him, including providing care packages and hosting a Facebook support group for other parents and grandparents that have lost a child or children to CDH.

By Carah Hicks
Mommy to Brian Earl
Congenital Diaphragmatic Hernia
October 17-21, 2018