Discovering a potentially lethal condition
“Prenatal testing can be a very important and emotional decision for parents,” Dr. Wick says. “If the infant has a lethal condition, discussion should include monitoring during labor (for example, a fetus with trisomy 13 or 18 may not survive delivery, so the couple should decide if there will be any intervention, such as emergency Cesarean for an abnormal fetal heart tracing. If no intervention is planned, then the infant is usually not monitored during labor).
Dr. Wick advises couples to plan ahead for either scenario, whether the child is delivered in good health or something goes wrong and the child does not survive delivery.
Acknowledging how difficult it will be to face these questions, Dr. Wick encourages couples to plan ahead and ask:
- Will there be surgical interventions for a lethal condition or comfort care? “If you are at a small community hospital, your care provider may be more comfortable sending you to a tertiary center where there is more likely to be a ‘bereavement team’ and providers who have special training in the care of these families,” Dr. Wick says.
- If the infant has problems and there will be interventions (e.g., cardiac problems) will there be specialists at the delivery (e.g., pediatric cardiology)?
- Antenatal testing (weekly or twice weekly testing before delivery), typically with ultrasound and/or monitoring of the infant’s heart rate tracing, can be used to assess for developments such as hydrops or abnormal blood flow in the infant. If the testing is abnormal, and the infant does not have a lethal condition (or there is a lethal condition and the parents are hoping for a live birth) then testing may help the care team make decisions about early delivery.
Learning to breathe smoothly
In our case, our son looked perfectly healthy via ultrasound on a Friday, and by Monday morning had quite a bit of fluid building in his left lung cavity. Our physicians consulted with other physicians in the Northeast and decided we should continue to monitor the situation.
By the following Friday, the fluid had increased, and I was on my way to the hospital. Before Charlie was born at 33 weeks, weighing 4 pounds, 14 ounces, maternal and fetal physicians removed most of the fluid in his lung cavity, in utero.
As I lay staring at one spot on the ceiling and trying to breathe smoothly and evenly, a physician inserted a needle into my abdomen, then into my uterus and into Charlie’s left lung cavity to withdraw fluid.
Twice, my husband watched as a nurse who had become a trusted friend helped guide each physician’s painstaking precision using ultrasound technology.
Those moments were perhaps the most vulnerable I will ever feel as a parent — or I certainly hope so. I was putting my child’s life in doctors’ hands, trusting their skill and expertise.
Trusting your medical team
When Charlie was born, he had a chest tube for one week before the fluid subsided and his lungs remained clear. I’ll never forget the incredible work, patience and compassion of the physicians who monitored Charlie, modified his treatment and ensured he could come home with us one month after he was born.
The rollercoaster had many curves and many dips, but throughout our journey, we had complete confidence in our physician, Dr. David C. Shaver, at Presbyterian Maternal and Fetal Medicine in Charlotte, North Carolina.
He never frightened us, and he never sugarcoated the truth. He asked for our thoughts, and respectfully and delicately shared his professional opinion when we hesitated.
The best illustration of his dedicated demeanor came one afternoon, midway through the pregnancy, when Charlie’s hydrops had resolved almost entirely, which we greeted with wary, nervous joy.
Dr. Shaver sat for what seemed like days, sliding the ultrasound device over my belly, pushing and prodding, then stopping and staring at the computer screens without expression. My husband and I exchanged nervous glances several times, as the exam went on and on.
Becky, our by-now beloved nurse, returned to the exam room and, upon seeing Dr. Shaver still studying the screen, said, “Oh, I didn’t know you were still looking! Everything OK?”
Dr. Shaver nodded. He never looked up from the screen. “Everything looks great,” he said calmly. “I’m just… being paranoid, I guess.”
My husband and I looked at each other, relief escaping audibly from our lips. “Dr. Shaver, you can watch for a week if you want,” I said.
His was the last hand I shook nearly 18 months later, as I prepared to have a scheduled C-section with our second child, our daughter. Parenthood is scary, and the moments leading up to childbirth are a whirlwind. Trusting your physician implicitly makes all the difference.
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