Featured cherub of the week is Sarah Elana McKagan. Sarah is the daughter to our CDH International California Ambassador, Rachel McKagan and her husband, Matt. Rachel had this to share about Sarah:
“Our CHERUB, Sarah Elana McKagan.
In June of 1998, my husband and I went in for a routine ultrasound and watched as the technician’s face grew serious and she excused herself to go find a doctor. As the doctor entered the room and looked at the ultrasound image, she broke the news: our baby had a defect known as Congenital Diaphragmatic Hernia.
There we were—two wind musicians sitting in shock as we heard that our baby’s lungs looked to be compromised. Not quite understanding the severity of the defect, we said, “Well, I guess the baby will have to play percussion!” The doctor was not amused.
After further genetic testing, it was determined that there were no other disorders present. The March of Dimes flew us up to the specialists at UCSF for a marathon day of ultrasounds and scans. At the end of this exhausting day, the doctors convened to tell us that, at the most, our baby had a 30% chance of survival. The head-to-lung ratio was inconclusive and the liver and spleen, as well as the stomach and intestines were all up in the chest cavity, making the case a severe one.
The team presented this information to us and then gently told us that it was wholly our decision to either 1) terminate the pregnancy 2) have experimental “fetendo-clip” fetal surgery which might result in a premature baby, complicating the already fragile lungs, or 3) deliver the baby at a center that had a special ECMO machine. After carefully considering all three options on the longest flight home, we decided to go ahead and deliver the baby at an ECMO center. Living outside of Los Angeles, the closest ECMO center was at UCLA (my alma mater) and we made arrangements to meet with their pediatric surgeon the following day.
After going to two ultrasounds per week for the next six months, our daughter kicked the amniocentesis needle in utero, causing blood to infiltrate the amniotic fluid. Luckily, the special team of surgeons we had met were all on call and the doctor rushed me in for an emergency C-section at 37.5 weeks. Sarah Elana McKagan was born and fighting for her life.
When Sarah was born, she did not cry. The doctors did not have time to weigh her. They hooked her up to the ECMO machine which they had hastily brought into the delivery room. As the parade of doctors, nurses, and machinery rushed past the doorway on the way to the NICU via elevator, I recall thinking, “Wow—all of that big machinery is keeping such a tiny little body alive.” The elevator doors closed with a centimeter to spare.
During her first nine days in the NICU, Sarah’s status altered between dire and awful. On the third day, Sarah’s heart stopped beating. Apparently the heart was “offended” by the ECMO machine doing all of the work. She was conscious and looking around, but her monitor showed a flat line. Some doctors brought in other doctors who had never seen this odd situation before. Sarah’s heart was flatlined for three days and her kidneys began to fail. We started to prepare for a possible funeral, knowing this situation was not sustainable.
On day 4 of the heart stun, though, doctors were shocked to see that Sarah’s heart had, inexplicably, begun to beat again. As I was still an in-patient recovering from my C-section, they called us down to the NICU immediately and we all celebrated.
But our relief was short-lived, as there was doubt that Sarah would have enough lung tissue to survive without ECMO. If she did not have enough lung tissue, the repair would be futile. Doctors began to test her lung size by “sprinting” her off of ECMO for short periods and then analyzing her blood gases. The first few sprints were not promising. But after a short break, her last sprint yielded acceptable levels of blood gases… our baby had enough lung tissue to survive! The doctors all broke into a cheer and there were hugs, high fives, and tears as they scheduled her repair for the next morning.
All told, Sarah spent 87 days in the NICU. It turns out that her liver, spleen stomach, and intestines were all up in her chest, giving her only ¾ of one lung on one side and only a “nub” on the other. Her diaphragm hole was huge, with no surrounding diaphragm muscle rim on one side, making it necessary for the surgeon to attach the Gortex patch to her rib meat on that side.
During her time in the NICU, there were countless setbacks—Sarah’s lack of albumin caused her to “third-space” her fluids, making her body swell tremendously. Her surgical site could not heal due to her lack of albumin and got infected, causing fevers. Retention sutures were needed. A chest tube was placed. A tracheotomy was scheduled. One week before the trach surgery was to happen, the nurses heard a weird sound emanating from Sarah’s area of the NICU. It turns out that Sarah had taken matters into her own hands and pulled out her breathing tube and was breathing on her own!
When Sarah finally came home, she was on a feeding tube, as she never learned to suck properly. She was re-admitted twice during her first year—once for a re-herniation, and once for a bowel obstruction caused by scar tissue from all of her surgeries. She was on the feeding tube and oxygen for one full year.
Miraculously, Sarah’s childhood was pretty typical. I was fierce about hand-washing and we all got flu shots every year. She learned to swim, tested into the gifted program in elementary school and got the chicken pox, despite having gotten the vaccine. At age twelve she was diagnosed with moderate scoliosis (due to the Gortex being sewn to her rib meat) and she wore a brace at night. We have always had “worries” about Sarah lurking just under the surface of our consciousness… would she have another bowel obstruction? What if she caught pneumonia (again)? I know that all parents worry, but after going through such a roller-coaster of calamity in those first three months, every cough sparked a heightened level of panic within me.
Fast forward to 2019… Sarah is now a 20-year-old miracle who plays the trombone as a Jazz Studies major at UCLA—the place that saved her life! Her only lasting complications are the moderate scoliosis, and the inability to take the HUGE breaths that the other trombonists can take while playing in the UCLA Jazz Orchestra.
Sarah also has a tremendous number of abdominal scars from all of her surgeries, which require explanation when she wears shorter tops, or changes clothes in front of people. Not long ago, Sarah brought up her scars as we were talking about her roommates. “My roommates think my scars are so cool. I know there are probably some people who might be embarrassed by huge scars, but not me,” she said. “My scars are my trophies. I think of them as symbols of my courage…my proof to myself that I am strong and can survive anything.”
Bless you, Sarah McKagan. You are an angel on this earth.”