On the morning of the fifth day of Riven's life we noticed something was wrong. He was overactive, had quit sleeping and had quickly become extremely jaundiced. We caught the first flight to Belize City where he was immediately admitted into emergency care. After a bilirubin test came back with a level of 35.5 (normal is under 5.2), Riven was diagnosed with possible Kernicterus, a devastating rare form of brain damage caused by a high concentration of bilirubin in the blood. He was immediately put under triple light phototherapy and a few hours later given a double volume exchange transfusion that replaced 85% of his blood with donor blood. As Riven's bili levels dropped and he was able to come out from under the lights and off his oxygen, he started having seizures. A catscan showed swelling on the brain so he was prescribed Phenobarbital (later weened successfully in the US) to prevent them from reoccuring.
These procedures saved Riven's life and after a nine day stay in the hospital, he was stable enough for us to fly back to the US for more specialized care not available in Belize.
We returned to our Virginia home hopeful that the worst was behind us. Yet after an abnormal EEG and a neurologist who had never seen a case of kernicterus, we realized the gravity of the situation.
The second piece of bad news came when his audiologist diagnosed him with Auditory Neuropathy, a hearing disorder commonly associated with Kernicterus where sounds enter the ear normally, yet the signals sent to the brain can be impaired or distorted.
Through some frantic research we found Dr. Shapiro, the only Kernicterus specialist in the US at Children's Mercy Hospital in Kansas City, Missouri.. When Riven was five months old we were finally able to get an appointment with Dr. Shapiro. He opened his clinic for one day, to only see babies under 14 months of age.
We immediately flew to Missouri where Dr. Shapiro and his team confirmed Riven's diagnosis of Kernicterus, along with Cerebral Palsey and Dystonia, a condition that causes uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain.
Riven is now almost 17 months old. He just last week rolled over unassisted for the first time. A huge accomplishment considering his body fights against everything his brain is telling it to do. He is not yet sitting, crawling or talking. He also can't get anything in his mouth which is a huge source of frustration for him. This makes being a baby very hard and not that much fun.
So here is our plan to help Riven progress and hopefully get him to the point where he can do normal toddler things like destroy his big sisters carefully crafted Lego village.
Stem cell therapy at the Stem Cell Institute in Panama City, Panama. Stem Cells Journal
cost: 15,800 plus airfare.
Physical/nuero therapy intensive at the Carillon/Virginia Tech research center in Roanoke, Virgina.
cost: 15,000 plus travel expences for 4 weeks,4-6 hrs every day. Nuero-rehabilitation therapy
If either of these therapies help him in any way we will be scheduling more.
Right now Riven sees a physical therapist once a week and a speech therapist twice a month. All of these visits are thankfully covered under his insurance plan.
The therapy we are raising money for is NOT covered and will never be. All funds you donate will go into a Special Needs Trust, and will be used for therapy, specialized equipment and travel.
Thank you for taking the time to read our story. We are grateful for your support.
Amber, Mez, Avalon and Riven
Riven's bilirubin spike was caused by a blood incompatibility. I am rh- and he is rh+. If you are pregnant and are rh- please have your baby's bili levels monitored closely for a week after birth if they are rh+.
Blood incompatibility is not the only thing that can cause bili levels to spike but it is one of the main risk factors. Educate yourself. If your baby is yellow at all have them tested. Fight for it if you have to. Kernicterus is totally preventable.
- Tammi Hellwig
- Kitter Bishop
- Simon Levy
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