never a dull moment: Baby C's Story

During a routine 21-week ultrasound, we were thrilled to discover that our first child was a boy. Seconds later, we were devastated to hear that Baby C had a Congenital Diaphragmatic Hernia (CDH). CDH is the absence of the diaphragm, or a hole in the diaphragm. The diaphragm is the breathing muscle that separates the chest cavity and the abdominal cavity. The diaphragm develops when the fetus is about two months old. The contents of the abdomen, including the stomach, intestines, liver and spleen, move through the hole and grow into the chest. These organs prevent the normal development of the lung on that side, and affect the development of the heart and the other lung. After birth, the infant will have difficulty breathing, and will likely require resuscitation and ventilator support. Once stabilized, which can take days to months, the infant will have to undergo surgery to repair the diaphragm and place the organs in their correct places.

We lived the remaining 18 weeks of the pregnancy with the nagging voice in our heads that our only child might die very soon after his birth. Every time we bought something for him, when we decorated his nursery, when we went for weekly fetal ultrasounds, as my belly continued to grow prompting people asked about the baby, every time he kicked….we were reminded that there was a 50% chance he would not be coming home with us alive. We had to do what no parent should ever have to do: we had to actually talk about our infant child’s funeral, because there was a real chance we’d be planning one.

In the prenatal ultrasounds, they could see that the bowels and stomach were "up" (above the diaphragm/in the chest cavity) and they saw a wedge of lung on the left side. His heart was shifted over the right side, thus putting pressure on his right lung as well as stretching out his aorta. We were also told that there was a possibility he'd have to have open-heart surgery to repair his heart and aorta.

I was placed on bed-rest around 31 weeks due to pre-term labor and we had to temporarily relocate to a home near Duke University Medical Center in case Carter was born early. We lived in that home for 5 months, free of charge, thanks to The Parker Reese Foundation.

We hope that his story will touch you and you will, in turn, help us to raise awareness.

This is Baby C’s story…

October 7, 2008: Born at Duke University Medical Center. There were over 15 people in the delivery room waiting for his arrival. We weren't allowed to hold him because he had to be stabilized and immediately intubated. He was then rushed to the Neonatal Intensive Care Unit (NICU). It would be more than 7 hours before we saw him again. We had a meeting with his team of Doctors and were told that he had what they called a "major defect."
October 8, around 3am: we were visited by one of C's Neonatologists, who told us that C was experiencing a great deal of pulmonary hypertension (which is the most significant cause of death in infants with CDH) and that they were putthing him on a jet ventilator and Nitric Oxide. (for more information, please see this site: CDH care at Duke.)
October 9, around midnight: Surgery #1 to be placed on ECMO (extra corporeal membrane oxygenation), a heart/lung bypass machine. We were told that without ECMO, Baby C would not survive to see the following morning. ECMO removes ALL the blood from the body, cycles it through a mechanism that oxygenates and warms the blood, and then returns the blood to the body. This is all done via two cannulas that are surgically implanted into the carotid artery and jugular vein. While on ECMO, he had over 60 blood and plasma transfusions!
October 27: Surgery #2 to remove Carter from ECMO. Typically, CDH babies are on ECMO for 7-14 days; C needed it for 18 days. It took 5 attempts to cycle off of ECMO, occurring over several days, before Baby C could successfully survive without the help of the machine. After the 4th failed attempt, we were told that if the 5th attempt off was not successful, we would have to sit down with the team and have "the" talk. We would have to decide if it was in C's best interests to continue these trials and continue being kept alive by a machine. Thankfully, the 5th time was a charm!
November 6: Repair Surgery (Surgery #3). This surgery was to repair his diaphragm and move his stomach, intestines, liver and spleen from his chest down to his abdomen. This surgery lasted several hours. He had intestines all the way up to his shoulder! His repair was done using part of his abdominal muscles to create a diaphragm. Because his abdomen was so small, the surgeon was unable to completely close Baby C, and so the wound was left open so the skin could stretch.
November 12: Surgery #4 to close the wound.
November 18: We held him for the FIRST TIME! He was 43 days old.
November 26: Extubation. He was able to breathe without the assistance of a ventilator for the first time since birth.
While in the hospital, he also battled a feeding aversion and severe narcotic withdrawals, requiring Methadone treatment at just a few months old.
January 30, 2009: After 115 days in the NICU, he came home! His medical bills just for the hospitalization top $1.5 million dollars (we are certainly thankful for health insurance). He still suffers from severe gastro esophageal reflux, which is one cause of his feeding aversion. Because of his refusal to eat by mouth, he came home eating via a Nasal-Gastric feeding tube (NG tube).
Sept. 24, 2009: C pulled out his feeding tube and he hasn't needed it since. He is now officially, after a whole year, TUBE FREE!

The following are Baby C's Stats from his inpatient hospitalization. Truly, I can't believe he doesn't glow in the dark from all the radiation he's been exposed to!