A Twin Pregnancy Part 3: Blindsided by Doctor’s Counsel
The Story of a Prenatal Diagnosis
November 9th, 2016 arrived and it was time to visit the Maternal Fetal Medicine clinic for high-risk pregnancies for the first time. I was 19 weeks pregnant with twins, and just last week I had found out that I was going to have a boy and a girl. But I had also learned that my little boy had a condition called Congenital Diaphragmatic Hernia although no information had been shared as the severity of the condition. We entered the clinic that day with hopeful expectation that whatever had been detected the previous week was no longer a concern.
After waiting for several minutes, an ultrasound technician called out my name and we followed her down a long hallway to her room. She dimmed the lights and began a two-hour-long detailed ultrasound taking many pictures and measurements of each baby. As I looked at “Twin A” and “Twin B,” to my untrained eye they both looked perfectly normal. The technician finally completed her job and then asked us to follow her down the serpentine hallway once more to a bright consultation room. There she left us to wait to speak to a doctor.
A female, middle-aged doctor soon entered the room and took a seat. She introduced herself and told us that our little boy did in fact have Congenital Diaphragmatic Hernia.
“Let me explain CDH,” she began, her brown hair tied up in a neat ponytail. “CDH occurs when the diaphragm, the muscle that separates the chest from the abdomen, doesn’t close properly during prenatal development. The hole in the diaphragm allows the organs of the abdomen—the kidneys, intestines, and sometimes the liver—to migrate into the chest. When this happens, they crowd out the lungs and impact the growth and development of the lungs. As a result, the lungs will be smaller than regular, healthy lungs, something called pulmonary hypoplasia. They will have under-developed blood vessel, which causes high blood pressure in the lungs, or pulmonary hypertension.
“CDH is one of the most common major congenital anomalies and occurs in about 1 of every 2,500 live births, but we don’t know what causes it. We just completed a high-resolution fetal ultrasound, and we can see that the liver and some of the intestines have moved through the hole in the diaphragm of Twin A and have pushed the lungs and heart to the left. The left lung is quite small while the right lung is almost nonexistent.
“The strongest predictor of the severity of CDH is the location of the liver. When the liver is up in the chest, there is more pulmonary hypoplasia, or smaller lungs. We can predict the degree of pulmonary hypoplasia by measurements taken during the ultrasound. We measured the size of the left lung—the larger of the two—and the size of the head. From these measurements we determine the lung-to-head ratio (LHR), which is used to predict survival. Twin A’s lung-to-head ratio is 27%, meaning that the left lung is 27% of the size of a healthy lung in relation to the head. This percentage is quite low…We would predict a 25%-50% survival rate, but realistically more towards 25%. Survivors of CDH often go on to have other health concerns such as pulmonary hypertension, asthma, developmental disabilities, scoliosis, feeding disorders, hearing loss, and gastrointestinal reflux.”
So there it was. The bleak outlook of our beloved boy for whom we had such hopes and dreams. This was a lot of information to get take in and I wasn’t quite sure what to think. I looked over at Mauricio, and I could see from the look of serious concentration on his face that he is processing the situation.
“Given the severity of the fetus’ condition,” she continued, “there are certain options that you may want to consider. Some couples decide that they’d like to consider a reduction. We can refer you today to the services you’d require should you make that decision.” The doctor spoke to us softly, soothingly, with a look of compassion, but I detected some unease as she attempted to shroud the significance of these words. “This is a time-sensitive matter, though. We’d like to do the procedure no later than 22 weeks.”
I felt like the wind had been sucked out of me. We’d just been given a devastating diagnosis, without any time to process, and what was she now suggesting? Before even learning what his treatment options would look like, was she really suggesting we choose to end his life?
I was thankful that Mau was with me, thankful that we had the same convictions even though we hadn’t had the opportunity for discussion, and thankful for Mau’s strength. He responded, “We realize that you’re talking about abortion, and you need to know that abortion isn’t an option for us. We choose life for our child, and we will fight for his life. As long as we can fight for his life, we will.” He said this politely, but with a firmness that I admired, not being one myself to speak quite so forthrightly.
This was the first of multiple encounters with medical professionals that we had in which we needed to stand up for the right of our little boy to live—a boy who is precious and beloved, a boy created in the image of God, a boy who was already known by his Father in heaven. The battle for his life had begun; the forces of darkness seeking his demise countered by the forces of light speaking truth and hope and faith.
“For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.” (Psalm 139:13-14)