I was very cautious throughout my pregnancy because of my anti-E antibody titers. During the second half of my pregnancy, my Maternal Fetal Medicine physician (MFM) was checking weekly ultrasounds due to the potential for fetal anemia. Even though Jacob was born four weeks early and placed on phototherapy lights the day he was born, he was healthy enough to be discharged within 48 hours. When he was discharged, he was discharged without a phototherapy blanket and without follow up lab work despite my concerns.
When I went to my lactation appointment a couple days after my son was discharged, I asked the nurse if she could run a test to check his bilirubin level. She was surprised the doctor had not posted an order, so she ordered it for us.
I was shocked when she called us a couple hours later with directions to head straight to the hospital because a team would be waiting for us. They told me his bilirubin level reached critical levels and needed a life saving procedure.
My heart ached as he was intubated and intravenous lines placed in preparation for the double volume exchange transfusion – a critical treatment for saving his life.
We waited for a painstaking twelve hours. The procedure never happened due to “logistics” in receiving the special blood, so he was given other measures which slowly lowered the bilirubin. The next day, the neurologist told us that his MRI showed brain damage. Anything else the neurologist told us was simply a blur – I couldn’t hear anything else she said. How quickly my life was turned upside down, from the happiest day to the darkest day of my life.
Jacob was sedated and then lethargic for several days. The Neonatal Intensive Care Unit (NICU) doctors told us to “wait and see”. We were sent home again; this time with a heavy heart still in shock and despair wondering what could have gone so wrong. They told us Kernicterus is a spectrum, but what did that really mean? This uncharted path of uncertainty was torturous.
Watching and Waiting for Symptoms
Jacob’s brothers are ages 5 and 3. They love to sing and talk to him. His diagnosis of Auditory Neuropathy Spectrum Disorder (ANSD) with profound hearing loss is devastating as it means that Jacob can no longer hear his brothers.
With ANSD, he did not respond to fire alarms, banging pots and pans, and during audiology testing didn’t respond to the highest decibels.
Jacob’s arms and legs felt tight and stiff, it was hard to change his clothes. We worried endlessly about cerebral palsy – which is another symptom of Kernicterus.
I have spiraled into a depression, riddled with anxiety and guilt. It killed me that I was not able to protect my baby who was born perfectly healthy.
Jacob’s journey is far from over, but if sharing his story helps one innocent baby, then this horrific nightmare has not been suffered in vain.