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.
Sincerely,
Amanda's mom, Brenda Slavin (Marylan)
Sincerely,
Amanda's mom, Brenda Slavin (Marylan)
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