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Andrew's Story   — Grace Trujillo, sacramento, CA, USA

My son, Andrew, was born on March 11, 2001. He was our very first child and we had anxiously awaited his arrival saving up for years just for this special occasion. Just like every other woman who has had a baby before me, I had a normal pregnancy. The only concern that I had was that I had spotted very little when I was a month and a half along, but my doctor had reassured me that everything was fine. At nine weeks, I had my blood and my urine culture work done; however, I was never tested for Group B Strep during my 35th-37th week of pregnancy. Not until after the birth of my second son, Matthew, did I find out that I was, in fact, a Group B Strep carrier. I had been provided with and given antibiotics before given birth to Matthew. He is healthy and doing very well; however, I had NOT received any antibiotics with Andrew. I was in labor for eight and a half hours with Andrew. During this time, my husband and I had felt that my fetal monitoring strip was not working correctly and/or not registering my contractions. I had both an external and internal monitor hooked up to me. At one point, one of the nurses had called a “Code Blue.” The following are some of his information at birth: His apgar: 8/9 His weight: 7 lbs. 1 oz. Gestation: 38 weeks 3/7 Andrew had shown the following signs within two hours of his birth: • He had very poor sucking. • He was grunting. • His temperature was not taken, as it was required. As many mothers before me, I had tried to breastfeed him immediately but he was unable to latch on to my breast. The nurse had said that he was just sleepy and that I had a difficult time breastfeeding him because I was a first time mother. But the next morning, I had tried, yet again, but he still did not latch on to my breast nor was he able to feed from a bottle. At this time, Andrew was twenty hours old and was taken immediately taken to the ICU. The nurse explained that several tests were going to be run on him just to make sure that he was fine since he was a newborn. Andrew was in the ICU from March 12-14th, 2001 at which point he had developed a case of jaundice. This was twenty-eight hours after he was born; however, his blood was not drawn until thirty-five hours later. His bilirubin levels were approximately 8.6 (in the 75th percentile). Fifty-seven hours later he was retested, whereupon, his bilirubin levels were at 11.3 (in the 40th percentile but still closer to the 75). Andrew was never retested to see if his bilirubin levels had increased or decreased and never followed up on. The ICU doctor told us that Andrew had an obstruction in his nose and that steroids were given to him to reduce it. Also, we were told that he had jaundice but not to worry because all newborns have it and should disappear in a couple of days. We were advised to put him in the sunlight. I had mentioned to the doctor that I had tried to breastfeed him several times but that he seemed to have trouble latching on to my breast. He explained that since I was a new mother that it would take a while for him to learn to latch on to me. Meanwhile, I was having very sharp pains in my womb. Through March 13th-14th, I was given antibiotics for a mild case of endometriosis. (This was a sign of Group B Strep bacteria.) We, Andrew and I, had left the hospital on March 14, 2001 at approximately 9:00 p.m. My son was then seventy-one hours old. (Andrew should have had further blood testing done.) After being home for about a week, we noticed that he suffered from severe back arching, and poor feedings. I called the advised nurse and she said again that he was having a hard time latching on. To give him time and that was a first time mother. Andrew had his first doctor visit after eleven days. I kept insisting to his doctor that he had a severe case of jaundice (because it was not going away as mentioned before), but also, that he suffered from other symptoms. Group B STREP (sepsis) + Jaundice = Hyperbilirubinema or Kernicterus His doctor completely brushed me off and reassured me that it would eventually disappear. I was told, again, to put him in the sunlight. By now my son was the color of an orange. Yet, I did not pursue it because I was reassured that every thing was okay and I, trustingly, believed her. After just being fourteen days old, Andrew had broken into a rash. He first had come down with fevers and then broke into the rash. I, immediately, made another doctor appointment when he had begun to have hard time breathing. When Andrew was two months old, I got the devastating news that he could be blind from his right eye. But that wasn’t the worst thing, his body was like jelly (both his arms, legs, back, and neck muscles we extremely limp). He was unable to hold his head up, be on his stomach, sit on his own or make a fist. From that point on, my husband and I had begun to put Andrew through many tests, such as, CT scans, MRIs, genetic, and even, DNA testing. To our surprise and bewilderment all results came back normal. I started thinking that something was not adding up here. Why is my son like this if all his tests came back normal if it was not for a medical reason? I had then begun to look into his medical records for any clues or, better yet, any answers. At first, I had believed that Andrew had suffered from lack of oxygen because his fetal monitoring strip showed that he had several late decelerations. I believe that the specific and correct medical term for the infection that Andrew had suffered from is called “ACUTE Bilirubin Encephalopathy.” Presently, Andrew is a very happy five and a-half year old boy who loves animals, as well as, playing with other children. He has an IQ of fifty-three. Despite having an upper body low tone, he is, now, able to walk and run. Of course, he has to have his hands in an upward fashion to feel secure with his balance. Andrew is able to talk and form sentences, certainly with much help from his long term speech therapies. This was not the case, two years ago, when he had a vocabulary of only eight words. He still has a severe case of sensory issues, in addition, to his difficult time staying focused and concentration. Furthermore, Andrew has behavior problems and will be seeing a behavior specialist for these issues. However, I was recently told that children with special needs do not, usually, have behavior problems so I am quite perplexed about this. I took him to get an EEG done to see if we can find some answers as to why he has these problems, instead he was found to be suffering from absence seizures. Andrew is still not toilet trained but we are, currently, working with him on this. He has, also, lost two of his front teeth from the top and bottom. I have noticed that his gums or the lower part of his gums are yellow. I believe that this has something to do with his suffering from the infection. Andrew has an extensive therapy history dating back since he was eight months old. My husband and I have, also, taken to video taping him over the years and showing his progress. The following outline describes the different programs, locations, year, and duration of his many therapies throughout the years. 2001 • Physical Therapy (1x wk) 8 months old - Alta -2001 • Occupational Therapy (2x mo) 1 yr. old - Alta -2001 • Teacher (1x wk) 8 months old - Sac. School Dist.-2001 • Parents, Aunt & Grandparents (3hrs a day) -Parents & Family 2002 • Water Therapy (1x wk) -Alta – 2002 • Playgroups (1x wk) -Alta - 2002 • Physical Therapy (1x wk) -Alta – 2002 • Teacher OT (1x wk) -Alta – 2002 • Parents & Grandparents (3hrs a day) -Parents & Family 2003 • Water Therapy (1x wk) Apr.- Aug -Alta – 2003 • Playgroups (1x wk) -Alta - 2003 • Speech Therapy (1x wk) - Alta - 2003 • Physical Therapy (1x wk) - Alta- 2003 • Teacher (1x wk) -Alta – 2003 • Music (1x wk) -Alta – 2003 • Hannen Classes (40hrs both parents) -Parents 2003 • Sac State Speech Therapy (2x wk) -Parents – 2003 • Planet Gym -Parents – 2003 • Parents, Aunt & Grandparents (3hrs a day) -Parents & Family 2004 • Occupational Therapy (1x wk) – Sac school - Alta - 2004 • Physical Therapy (1x wk) - Sutter Hospital - Alta - 2004 • Speech Therapy (1x wk)- Sutter Hospital - Alta -2004 • Music (1x wk) - Alta -2004 • Planet Gym (1x wk) - Recreation 2004 • Recently started pre-school (4x wk) Sac. School Dist - 2004 • Pre-school (4x wk) March -Sac. School Dist. - 2004 • Physical Therapy (1x wk) – April 2004 -Sac. School Dist. - 2004 • Occupational Therapy (1x wk) – April 2004 -Sac. School Dist. - 2004 • Speech Therapy – March 2004 -Sac. School Dist. - 2004 • Project Play (1x wk) - Parents -2004 • Speech at Sac. (2x wk) -Parent - 2004 • Behavior Classes for Parents of (16hrs) -Parents 2004 • Sac State Tutor on Speech Summer & Winter (4x wk) -Parents 2004 • Parents, Aunt & Grandparents (3hrs a day) -Parents & Family 2005 • Pre-school (4x wk) -Sac. School Dist.- 2005 • Music (1x wk) -Sac. School Dist. -2005 • Occupational Therapy (1x wk) -Sac School Dist. -2005 • Physical Therapy (1x wk) -Sac School Dist. -2005 • Speech Therapy (2x wk) -Sac School Dist. -2005 • Occupational Therapy (1x wk) July 2005 to present -UC Davis -2005 • Speech Therapy (2x wk) July 2005 to present -UC Davis -2005 • Horse back riding – Lincoln (2 hr drive) -ALTA & Parents -2005 • Oxygen Treatments – Florida 20 treatment April 2005 -Parents - 2005 • Oxygen Treatments – (1x wk) -Parents - 2005 • Dolphin Therapy – Florida 2005 -Parents - 2005 • Sac State Tutor on Speech Summer and Winter (4x wk) -Parents - 2005 • Project Play (1x wk) -Parents - 2005 • Behavior Specialist (40hrs ) -Parents - 2005 • Parents& Aunt & Grandparents (3hrs a day) -Parents & Family- 2005 2006 • Pre-school (4x wk) -Sac. School Dist, - 2006 • Music (1x wk) -Sac. School Dist, - 2006 • Occupational Therapy (1x wk) -Sac. School Dist, - 2006 • Physical Therapy (1x wk) -Sac. School Dist, - 2006 • Speech Therapy (1x wk, 30 min.) -Sac. School Dist, - 2006 • Occupational Therapy (1x wk) July 2005-present -UC Davis - 2006 • Speech Therapy (1x wk) July 2005-present -UC Davis - 2006 • Project Play (1x wk) Sac State Univ. (per semester) -ALTA - 2006 • Behavior Specialist -ALTA - 2006 • Function Tutor-Advantage Kids -ALTA -2006 • Learning Solutions (1x wk) -ALTA -2006 • Horse Back Riding (1x wk) (summer) ** -ALTA & Parents -2006 • Oxygen Treatments (40x ) Sacramento -Parents - 2006 • Dolphin Therapy (2 wks) Appt - July 2006 -Parents - 2006 • Sac State Tutor on Speech Summer & Winter (4x wk) -Parents - 2006 • Listening Center (4x wk) (4 Blocks) -Parents - 2006 • Water Therapy (Sea Otter) (Summer) -Parents - 2006 • Parents, Aunt & Grandparents (2hrs @day) -Parents & Family-2006 I am not sure to what degree they have helped my son, but they have helped with his progress throughout the years. Even if it is only a minimal improvement in his development it is still better than no progress at all. And for any child and parent who has special needs or a disability of some type that is a whole lot. Andrew had an MRI done when he was only eight months old and we did not know what we were looking at or for at that time. Only recently, have I, discovered through my research that you are able to tell if a child has been affected by Kernicterus just by looking at his/her MRI results. The MRI may look different depending upon which part of the brain has been affected by the bilirubin levels. A child’s brain shows to be stained yellow if affected by the following: acute bilirubin encephalopathy, chronic postkernicteric bilirubin encephalopathy, chronic bilirubin encephalopathy, and profound pathologic hyperbilirubinemia. Possibly a combination of Group B Strep (Sepsis) and jaundice turned into hyperbilirubinemia (kernikterus) to cause my son's disabilities. If I do not fight for or be my child’s advocate who then would fight for him. No child deserves to be affected by and suffer the consequences from such an infection. No child, no parent, and no family deserve such a cruel and painful fate.

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