Featured cherub of the week is cherub angel Elizabeth Staggs. Elizabeth is the daughter of our Virginia CDH International Ambassador, Clarissa Staggs. Clarissa had this to share about Elizabeth:
“We had never heard of congenital diaphragmatic hernia, CDH, before but at our 20-week ultrasound, those three little letters were going to change our lives. Everything had been going well for the pregnancy so we were not expecting anything to be wrong. The ultrasound technician did all the measurements, was kind of quiet, and left the room. I looked at my husband and said “something’s wrong, something’s wrong with the baby.” A few minutes later, the technician was back, followed by two doctors. They explained that our little girl had a congenital diaphragmatic hernia, what that meant, and that based upon her measurements, she had a 50-80% chance of survival. They also explained that if there was a genetic condition or a heart abnormality associated with the CDH, then her chances of survival dropped down to 5-10%. They wanted us to get a lot of testing done, talk to every specialist they had, and we had to do it in the next few weeks because we had to decide if we were going to continue the pregnancy or not. The next couple of weeks were a whirlwind. Eventually everything was sorted out and the next 20 weeks passed way too fast. The level of stress was crazy.
Finally it was time. I remember the doctor telling me to push and I burst in tears and said I didn’t want to because she was safe inside me so I wanted to keep her there. It wasn’t until he told me “your daughter is in distress and if you don’t push we will have to use the forceps” that I went to work. Elizabeth was born on April 24, 2009. The PICU team was waiting in the delivery room. As soon as she was born, they took her, told me “kiss your baby, mom” as they held her to my lips and then swooped her out of the room. A couple of hours later, a doctor came to me and told me our girl was not doing as well as they had hoped and they wanted our permission to put her on ECMO. Based upon everything we knew, this was an outcome we really did not want. But we didn’t have another choice. Elizabeth was hooked up to ECMO a few hours after she was born. She stayed on ECMO for the next 21 days, as long as she safely could.
Elizabeth stayed in the PICU for the next 28 days. Those days were a whirlwind of visiting the PICU, learning about the machines and numbers, meeting with doctors, and everything that goes along with having a child with a serious medical issue. There were 4:30AM phone calls where we were told she probably wasn’t going to last much longer and if we wanted to see her we needed to get to the hospital as fast as we could. There were a lot of prayers, tears, hope, fear, and second-guessing everything we did. In the end, none of it mattered. On May 21, 2009, our daughter, Elizabeth Kelly, died of complications relating to her congenital diaphragmatic hernia.
This was a rough time for us all. Our son was too young to really understand what was going on, beyond the fact that Mommy was crying a lot and Daddy was playing a lot of computer games. Everyone has different coping mechanisms and I think one of the things that allowed us to get through this as a couple was to recognize that and to give each other the space and support we needed. 10 years later (wow), we have another little girl who, thankfully, was born healthy. Both our kids know about their sister. She has a Christmas stocking we hang up every year. We have a few pictures of her. She is a part of our lives, always.”