Slavin, Amanda Brianne

[left:9b0b2cc203]http://www.cherubs-cdh.org/Album/new/slavin-amanda.jpg[/left:9b0b2cc203]I was told by a doctor I was probably infertile. Bob and I decided that we would adopt in the fall of 1993. We were just newleyweds when I found out I was pregnant. Both of our families were as excited as we were. On my sixteenth week of pregnancy I went for my first ultrasound. At first I couldn't stop smiling. Then as time dragged on I noticed the technician was staying on one particular spot for a long time. I began to feel panic. They informed me by baby had an enlarged kidney. Later that day I went to my OB appointment in a total state of shock. The resident covering for my doctor informed me I should probably have an abortion. She felt this was a life-threatening situation for the baby. I bluntly informed her I would not have an abortion and I was going to give this baby every chance I could. No matter what birth defects or disabilities this child has I would have this baby. (Later I found out the kidney problem was not life-threatening). I received my medical care at Bethesda Naval Hospital in Maryland because my husband was in the military. They are a research hospital so I became the highlight in the Prenatal Assessment Center for my weekly sonograms. I requested an amniocentesis. The chromosomes came back normal and showed we were having a little girl. Around my thirty-second week an ultrasound came back normal and showed "a mass" in her chest cavity. I was informed I would have to switch hospitals. I had to go to Walter Reed Army Medical Center in Washington, D.C. because Bethesda did not have a pediatric surgical team. (My husband was in California for a week for the military when they told me this news.) I read as much as I could on diaphragmatic hernias. The more I read, the more scared I got. In my thirty-forth week I went into pre-term labor due to excessive amniotic fluid. They were able to stop labor. On November 6, 1993 (thirty-eight weeks) I delivered Amanda after seventeen very physically and emotionally tiring hours. I remember as I was pushing her out thinking I really don't want her to be born yet. She was safer inside me. I was afraid of what was going to happen when her life was in the hands of someone else. I think right after birth I passed out. I woke up at 3 am to my pastor calling my name. All I could think was Amanda is dead. They assured me she was on the ventilator doing well. They told me she had a cleft palate, diaphragmatic hernia, hydronethrosis, and clubbed fingers with hypoplastic nails. On the second day of life they fixed the hole in her diaphragm. Her spleen and intestines were placed back into her abdomen. She did very well. She was completely off the ventilator within one week and acting like a normal newborn. Then they noticed she wasn't stooling properly. She had a biopsy of her intestines to prove she did have Hirschsprungs Disease. At one month of age she had surgery done to perform a colostomy. After the surgery she developed candida sepsis. We were certain we were going to lose her. She was on full life support for two weeks. At two months of age they noticed she had gastroesophageal reflux. They performed another surgery to fix the reflux and gave her a G-tube for feedings. (She could not suck well with the cleft palate) Finally January 18, 1994, we brought her home. In March I asked Amanda's nurse if she had stooled that day. She lied to me and said yes. Her stomach was distended. We went through the trash and only two diapers were found and neither with stool. We took her to the hospital. They tried several enemas. Finally the next day one of the enemas worked. She began spiking fevers. They thought she had osteomyelitis (which later was unfounded). She was in the pediatric ward on antibiotics for a month. I kept telling them the problem was her colostomy. Later in April at home Amanda went into septic shock. She had stooled earlier during the day but stopped in the evening. This time we ended up in the PICU on the respirator for a collapsed airway for five weeks. (Her fever shot up to 104.8 and trying to breath heavy she collapsed her airway) The doctors checked her intestines again and found her surgery wasn't performed properly. She was sent home on oxygen. She was weaned within two weeks. I had to give her an enema after each feeding everday. (Five times per day) In the end of June she began refluxing again. She vomited everything she ate. The surgeons refused to do anything for her until the end of August. It was frustrating calling them every day listening to them denying her medical care. In September she had surgery to fix her vomiting, fix her colostomy, and put tubes in her ears. She was admitted a few times in September and October for infections of her surgical wound. On Friday, October 28 Amanda developed a cold. That day I had taken her to a civilian hospital to start treatment. (I felt the military hospital did more harm than good). On Saturday they took an x-ray of her lungs and ruled out pneumonia. They put her on antibiotics and said they thought it was a virus and they would keep and eye on it. On Monday (Halloween) we bought her into the doctor at 9:00 pm. We got home around 11:30 pm and I put her to bed as usual. On Tuesday, November 1 (All Saints Day) I got up at 6:50 am and instead of going to the kitchen to get a cup of coffee, I felt drawn to her room. When i went to pick her up I noticed her legs and arms were ice cold. In the light I noticed she was bluish gray but conscious. She was breathing very shallow. I ran to turn her oxygen up. When I came back Bob was performing CPR. I took over CPR while he called 911. Amanda took her last breath in our living room while her eyes were locked on us. As difficult as it was, we were glad Amanda died at home. No tubes, no hospital, no doctors. She deserved to die in peace after all she had gone through. We found out from her autopsy she died of pneumonia. The x-ray done at the hospital did show pneumona. Here pediatrician overlooked it. The last few years have been the most difficult and most precious years of our lives. We're currently in therapy to deal with anger we have against the doctors and the military. (We're angry with the military because Amanda was a Gulf War Baby). Amanda will always be a part of our family. She taught everyone around her that Jesus is a big part of all of our lives and miracles do come true.
Udated 2005:

This is my cherub Amanda. She was my first child and I will cherish her forever. Amanda was born with Fryn's Syndrome. She underwent over 8 surgeries to correct her anomalies. She was spunky, sweet, and very courageous. She had a way of speaking to you with her eyes. (Some say she was an old soul.) All that were close to her could always understand her. She sadly died at home almost 6 days shy of her first birthday.

So many lives were touched by her presence here on earth and even after she went to heaven. She will always be a part of my life and has given me my most treasured memories. She was my inspiration to become a Pediatric ICU nurse. Thank you Amanda for giving me the gift to be a part of all of these special children's lives. Until I see your sweet face again


Written by Amanda's mom, Brenda Slavin (Marylan)
1995, Updated 2005