Havalah’s Wait


At first glance, Havalah Kolb is like any other 11-month-old baby. She smiles, bangs on toys, gets into everything, and is doted on by all who lay eyes on her. Her mother, Kristen, takes her for walks and makes sure that she gets plenty of play time. It’s hard to believe that this beautiful baby is dangerously close to liver failure. Havalah has a disease called Biliary Atresia. Nobody knows what causes this rare disease that affects 1 in 16,000 newborns. Babies with this disease lack bile ducts inside or outside of the liver, or both. Without bile ducts, toxins build up inside the liver, leading to extensive damage and, ultimately, liver failure. The external result of this condition is that it makes Havalah’s skin and eyes slightly yellowish. The internal result is that Havalah’s liver is progressively closer to failure with each passing day. Despite her low birth weight her parents, long-time Riverwest residents and homeowners Kristen and Steve Kolb, weren’t aware of any large-scale problems. “My pregnancy was high risk because I had gestational diabetes and the baby’s kidneys had shown up on a previous ultrasound to be echogenic (producing an acoustic shadow),” said Kristen. “There was a need for increased monitoring that involved ultrasounds once a week.” Shortly after she was born, Havalah, like many babies, was found to be jaundiced. Her bilirubin level, the amount of a breakdown product of hemoglobin usually measured to screen for or to monitor liver or gall bladder dysfunction, was monitored for several weeks after birth, according to Kristen. “The total was going down quickly but the conjugated level was barely going down at all. They kept running tests and nothing was really turning up.” The jaundice did not go away and Kristen began to worry. She was referred to a gastro-intestinal specialist, and it was there that Havalah’s parents found out that she had a liver disease caused by Biliary Atresia. At six weeks Havalah underwent a Kasai Procedure, removing the atretic biliary ducts outside the liver and attaching the small intestine to the liver at the spot where bile is found or expected to drain. Havalah recovered well from the procedure, but bile flow is re-established in most babies who undergo the Kasai Procedure. For some infants — such as Havalah — the Kasai Procedure helps little, if at all. The only other treatment option is a liver transplant. What does this mean for little Havalah? In the short term, it means she needs a liver transplant as soon as possible. She is on the waiting list through Children’s Hospital of Wisconsin, and her parents are eagerly awaiting a phone call. With a new liver, the future would look promising for Havalah. While she will always be on medication, a transplant promises her the possibility of a relatively normal, healthy life. But even if she receives a transplant, the financial considerations are daunting, with out-of-pocket costs that could reach $100,000 beyond her insurance coverage, and continued costs throughout her life. To help defray expenses, Kristen and Steve have many fundraising events planned. A community rummage/bake sale is scheduled for June 4-5 at Newhall just south of Capital in Shorewood, a silent art auction will be held at the Art Bar at 722 E. Burleigh on July 18, and another silent auction to be held at the M&M Club is in the works. For upcoming events, please see Havalah’s website, listed below. Interested in helping with gifts or arranging fundraising activities? Call Kristen and Steve at 961-6190. Tax-deductible donations may be made at Bank One branch locations or to the Children’s Organ Transplant Association, 2501 COTA Drive, Bloomington, IN 47403. Checks or money orders should be payable to “COTA for Havalah K,” with account number 1619972878IN written in the memo space. Secure credit card donations are also accepted online at www.cota.org. All funds raised are used for transplant-related expenses. For more information, please see Havalah’s website at www.brokebox.com/baby, the Children’s Organ Transplant Center at www.cota.org, or read about Biliary Atresia at www.classkids.org/library/biliaryatresia.htm.