Letter to WHO
This is a letter of mine that another Kernicterus Mom read to the World Health Organization in 2005.
I read that approximately 150,000 babies are born each year with birth defects. My son born just two months ago, is not one of that number. He was born a healthy normal baby. He left the hospital with jaundice, but we made sure to follow up with our practitioner twice during his first week of life. The relief and excitement that followed our son’s birth were quickly replaced with fear and anxiety as, at just 9 days of life, our baby was in critical condition with a bilirubin level of 45.6.
During my pregnancy and even prior to it, I did everything that I could to ensure that our little boy would be healthy and have limitless potential … eating the right foods, taking vitamins, avoiding alcohol and caffeine etc. I read every baby and child birthing book that I could get my hands on. In all of this material, I never read one sentence about jaundice. The extent of my knowledge of jaundice was that it turns a baby yellow. That’s it.
There are a lot of “what if’s” that my husband and I ask ourselves. “What if we had been informed about the dangers of jaundice?” “What if our baby’s bilirubin had been checked when we took him to the doctor?” Our baby boy now has Auditory Neuropathy, gaze abnormalities, neonatal seizures, and a chance of developing cerebral palsy.
My husband and I have shifted from wondering what color his eyes will be to wondering whether he will ever be able to walk or hold a pencil or communicate at all for that matter. I sometimes find myself in tears when watching other children play or hold their parents in a loving embrace …doing things that we always assumed our little boy would be able to do.
Our baby has been robbed of his potential, not by birth defect but by something that is absolutely preventable …Kernicteus. Our family and friends were shocked for two reasons, first to hear that hyperbilirubinemia can cause such devastation. Second, that considering these dangers, our son’s bilirubin levels went unchecked during his visits to the pediatrician.
Since this occurred I have learned what every pediatrician should share with parents – that jaundice can lead to Kernicterus. A very simple and inexpensive bilirubin test could have saved my baby from this horrible malady. It could have forever changed the future of my child. I ask of you what he cannot and what he never may be able to ask of you …that you do whatever you can to stop this from happening to other children. You have a great responsibility and I pray that you use it well. I am not a statistic. I am a loving mother that needs to know that you will not allow this to continue to occur.
10/31/05
Read to World Health Organization Tuesday 11/1/2005
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In the time since, the CDC has developed these materials, which are very handy for families with jaundiced babies. http://www.cdc.gov/ncbddd/dd/kernicterus/materials.htm The same woman that presented this letter, Sue Sheridan (another Kernicterus mom) worked hard to get these publications out there.
On a personal note, B has all of the conditions associated with Kernicterus, as the doctors predicted, and although this is a tragedy that must be prevented, God’s hand is very much in it and we continue to believe that “What er’ my God ordains is right” …it’s harder some days than others. We see God’s blessing and provision in ways that we never would have in different circumstances.
Looking back at these photos I remember the pure sweetness and excitement of my pregnancy, J’s homecoming, and our first week home with our precious, perfectly crafted, little boy. It still brings tears to my eyes! I love our B so dearly and I love the God whose way’s are not our ways.
I very much look forward to the day when he will “Wipe away every tear from our eyes.” What a sweet day that will be!
16 hours old, B looking up at his Uncle
a Rearranged Life 