We think your baby has Kernicterus. Those words will never be erased from my mind or memories. The whooshing sound of the breast pump as I sat there with just the tiniest sliver of the curtain open so the doctor could see me as I pumped. I was pumping for my baby I had given birth to just a little over a week ago and here I am in the hospital in a Neonatal Intensive Care Unit (NICU). I am not sure what I did: I can’t remember if I kept pumping, if I turned it off or if I just sat there. My baby has Kernicterus: does that mean my baby has brain damage? How is that possible?! I did everything right. How is this real?!
Sometimes, less often as the years have gone by, I go back to that day, to that memory. I remember the doctor who I had seen every morning since we had been in the NICU with our baby as he did rounds and updated the students on the current state of my baby. He would say “hyperbilirubinemia” and “Glucose 6 Phosphate Dehydrogenase Deficiency” as students took notes in their laptops. The look he had when he walked in on this particular day I will never forget. I was pumping, and as lots of new mothers learn quickly, pumping is not necessarily a private time. So, the doctor came in and said “Oh, I see you’re busy. I’ll come back.” But I didn’t care. I remember telling him, “Oh it’s fine, I’ll close the curtain.” Then the look came…The one that said he didn’t want to be here and didn’t want to say what he was about to say. He started to speak, “The MRI shows that your child has Kernicterus which we have discussed earlier was something we have suspected.” I said, “This means he has brain damage, doesn’t it?” The doctor said, “Yes. I am sorry.” He explained he would have a meeting with the team of doctors to explain it further. After that I don’t remember much. I don’t remember talking to my mother or mother-in-law, I don’t remember what my husband and I said to each other. All I remember is my mother leaving the room crying and me hugging my husband. Call it survival mode, call is PTSD, call it whatever you will. This was now my reality.
At some point my mother reminded me I had a follow up appointment to get myself checked out for my c-section. I didn’t want to go; I didn’t want to leave my husband or my baby. How could I leave now? My husband and mother insisted I go and how important it is to take care of my body as I had just gone through a major surgery. I remember the car ride, I remember passing a local school for kids with special needs – they were getting onto the buses to go back to their parents. My mom was driving and we both looked at each other. Without saying a word, we both knew what the other was thinking. Was this my baby’s future? Will he have a future? What does this mean for his life?
I remember getting to the doctor’s office and the nurse who had weighed me and checked my vitals all throughout my pregnancy was by the receptionist and asked me, “So where’s the baby?!” I replied, “He is in the NICU.” Her face said it all. I don’t remember what she said after that. I remember seeing my midwife who had been on this whole journey with me, and I had to explain what had happened. We were all crying and there really wasn’t much more to say than that.
So, why am I dredging up all of these painful memories that my mind has on some level blocked out parts? It’s simple: this is real, and it happens to families every day.
Kernicterus is a very rare type of brain damage that occurs in a newborn with severe jaundice. This is due to high levels of bilirubin and spreads into the brain tissues. It is permanent brain damage.
The reason why I am sharing one of the most painful times of my life is to help you understand this is happening to newborn babies across the world and it is 100 percent preventable. My son also has Glucose 6 Phosphate Dehydrogenase Deficiency (G6PD) and had his bilirubin level tested and had the doctor responsible for my son’s care taken my concerns seriously, the outcome would have been very different for my son and our family.
It has taken me years for me to stop asking “why us?” and start saying, “we were picked for a reason.” We were picked for the reason that no one will love, care for and fight for my son like we will. He was placed in this world for a purpose. His purpose is not one reason but many. He was meant to change my course in life. He was meant to show others that barriers are meant to be broken. He was meant to teach his little brother how to be compassionate, inclusive, and accepting. The list can go on for days.
I’m not alone in this journey and I meet new mothers everyday who have felt what I felt. They leave the NICU hospital with their babies who just days before were completely healthy. These women are scared, exhausted, angry and confused. These women have given me strength and have helped me on a level no one will ever understand unless you have lived it.
Together, we want to spread awareness by sharing our stories. Of course, we want to put an end to kernicterus to keep it from happening to newborn babies.