A Baby With Bells And Whistles

I remember looking up at Ruth, the OB nurse, hovering with me over our laboring patient one early morning and thinking, “I don’t think I can do this.” The patient was a 25 year-old heroin addict in the process of precipitously birthing a “healthy” baby girl. She was high on cocaine and heroin, uninsured, and had received no prenatal care. It was her third baby. I felt angry and resentful.

You see, I am an obstetrician who became pregnant after a long journey with infertility, and four months earlier had given birth to a much anticipated, and desired baby with UNANTICIPATED birth defects; VACTERL sequence (a series of “birth defects” that occur spontaneously affecting the vertebrae, heart, rectum, bowel, trachea, limbs, kidneys and esophagus). Abigail came to us via frozen embryo transfer after IVF. While I was pregnant, I received care from a highly qualified high-risk obstetrician faculty friend of mine. As an OB/GYN, I was all too aware of the possible risks of delivering a baby at age 36.

My prenatal testing was reassuring, and a high risk anatomy ultrasound done because I was “Advanced Maternal Age” showed an isolated umbilical cord abnormality sometimes associated with genetic defects. Because of this finding, I had an amniocentesis, which was normal. My partner, Tina (also an obstetrician), and I felt reassured. I was already vegetarian since high school, gave up caffeine in my pregnancy, didn’t drink alcohol, exercised 4-5 times per week and even avoided my diet coke! I developed preeclampsia and went on bed rest at 33 weeks and was induced at 38 weeks.

Abigail was born in a frenzy of my unmedicated screams on July 17, 2004 at 11:07 am. I was just glad the pain stopped. The neonatologist was kind enough to be present “just in case.” Immediately, though, it was clear she was not breathing well. I got a quick peek at her before she was taken to the NICU to be evaluated. Over the next several hours our neonatologist came back with updates and new “findings.”

Tina and I were told she had no rectal opening, and they were concerned she was “neuro-devastated.” As the next 24 hours unfolded, we learned of many of Abigail’s “bells and whistles” and apparent diagnosis of VACTERL sequence, but no one could tell us about her intellectual and neurologic prognosis. We cried. We felt angry. We reviewed my prenatal testing and ultrasounds with a fine-toothed comb. This wasn’t supposed to happen. We thought we were going to have a “normal” baby.

When Tina and I finally got to see her in the NICU incubator, many of our misgivings dissolved. She was BEAUTIFUL—red hair, ruddy complexion, tiny and she looked “normal.” 24 hours later we were riding in an ambulance to Children’s Hospital in Pittsburgh for a surgical consult and subsequent colostomy on her second day of life; then the adventure began. Abigail spent the first 4 months of her life at Children’s Hospital in Pittsburgh and continues to be a regular “customer” there.

After taking my maternity leave, I returned to work while still commuting to Children’s Hospital daily to see my daughter in the NICU. Delivery of that drug-addicted patient upon my return to work made me question how I could possibly continue doing obstetrics for a living. I was resentful that I had delivered a baby with complications when I had done “everything” possible to ensure a healthy pregnancy and baby. My patient simply came in and delivered a normal newborn without doing anything to be healthy for the child growing insider of her! I felt guilty for being angry at my patient. I felt angry that I had been dealt a child with so many issues. I had always assumed I would have the chance to have a “perfect” baby. With Abigail’s birth, I felt as if that opportunity was stolen from me.

Abigail’s birth reinforced that fact I am not in control, even if I follow all the rules. I hear every day from patients, “I can’t wait for this pregnancy to be over because…” and the assumption that life then becomes normal and predictable once the baby is born. The reality is that giving birth is like standing on the edge of unpredictability and the unknown. It is the beginning of relinquishing control. For my drug-addicted patient, clearly, her lack of control started prior to giving birth. Perhaps, with the birth of her child, I was somehow offering her the life-changing experience that would help her gain some of her self-respect and control back by offering sensitive, compassionate care and opportunities for recovery.

As I navigated my patients through their pregnancies and Abigail through her complex care, I began to feel blessed. Though I am not a religious person, I am deeply spiritual. Perhaps Abigail had been born to me for a reason. I became more empathetic and compassionate towards my patients, and I’ve acquired new expertise in steering Abigail through a very complex medical system and often pass on this expertise to my patients. I am a stronger patient advocate.

Abigail is now 11. Feisty, brilliant, stubborn, industrious, emotional, a talented singer and actress, and one of the toughest resilient people I know. She has had more than 35 surgeries. She relied on a tracheostomy and ventilator for the first 4 years of her life. She still requires “body work,” as we call it in our house. If you didn’t know her medical history, you would never know she had had any issues. She has inspired many people. During this 11 year rollercoaster ride, she inspires me daily. I am truly grateful for what I have and I certainly do not mourn what I don’t have and what I thought I wanted.