Elizabeth's Story
Elizabeth's Story (an adult survivor of a sacrococcygeal teratoma) From: "Elizabeth S. Hueske, Date: Tues Oct 14, 2003 11:47 am Subject: Story of my birth by my mother.
Here is the story mom wrote for me in her own words.
Elizabeth, your story begins in January, 1960. Your dad and I had been married almost a year when we decided to start a family. I had essentially no difficulty becoming. I visited Dr. JA McMillan, my Obstetrician shortly after I had missed a period, and it was determined that I was pregnant. I continued to see the Dr. each month for regular checkups. During the first couple of months I had only slight morning sickness. The Dr. game me medicine for it (can't remember the name) but a friend, Luetta might member what was prescribed back then, but I took it infrequently. I was also placed on a multiple vitamin-it was not known at that time that folic acid played a part in preventing birth defects.
As I approached the summer months I did have some swelling of my ankles and hands, but my blood pressure remained normal. About the 6th month, Dr. McMillan wanted to do x-rays (no sonograms at that time yet) because I was quite large and he thought I might be carrying twins. He could not hear two heartbeats but thought positioning might explain that, i.e. one fetus in front of the other. The e-rays indicated no multiple fetuses but did show an excessive amount of what they thought at the time was amniotic fluid. I was working as an RN in a Dr's office during my pregnancy and worked until approximately three weeks before my due date. I had a hearty appetite and craving for Mars candy bars. which I ate nearly every day. (maybe that is where you get your love of chocolate Liz. :-0).
My pregnancy was essentially complication free. But about two weeks before due date, my membranes ruptured and I began having contractions, so I was hospitalized on a Tuesday in a labor room at Mary Lanning Memorial Hospital in Hastings, Nebraska, and placed on bed rest to prevent umbilical cord prolapse. There I stayed in bed until Friday. I was felling well and all my old nursing friends would stop by to visit. It was a fun time. Your dad was still flying for the Nebraska Air National Guard in Lincoln and decided to go for a weekend of flight training. He had been gone only about thirty minutes when I once again began having contractions. He was summoned back to Hastings by the highway patrol. About two hours after his return the contractions again stopped.
Late that afternoon the Dr. came in and decided to make a vaginal exam to see what my progress was. H found what seemed to be the placenta protruding through the opening of the cervix and thus assumed my membranes had "sealed over". It was at that time that they decided to do a Cesarean section the next morning. Now GOD was in this decision, we understand that now. Often the Dr. will rupture the membranes to re-initiate labor. Dr. McMillan DID NOT--he must have realized that he should not, because as it turned out, the membranes protruding through the cervical opening was a portion of the Sacrococcygeal Teratoma! If he had ruptured that portion of the teratoma, Elizabeth would have died.
At that time it was customary to give women enemas to "cleanse" the bowel before childbirth. The nurses did not follow this procedure before my section and this resulted later in a paralytic ileus with the need for a naso-gastric tube for five days after I began vomiting fecal material and having severe abdominal pains. I was wheeled into surgery where Dr. McMillan performed a C- section. He used a midline incision which wa customary at that time, but when he realized that Elizabeth had a "growth" on her backside, he had to extend the incision in both the abdomen and the uterus to facilitate getting her out. (She never 'dropped' into the pelvis in preparation for birth like 'normal' babies because the teratoma prevented that from happening. My dear friend Sherrill Crone, who was a surgical nurse, but was pregnant and almost due with her own firstborn, had come to surgery to give me support. When she saw Elizabeth had a birth defect, she requested the doctor to baptize Elizabeth right away, which he did. Our minister, Reverend deFries, advised us that this was a sufficient baptismal procedure and need not be repeated.
When I woke up, I was back in the labor room, where they kept me my entire hospitalization-about 10 days. Dr. McMillan came in to see me almost in tears to tell me about the 'growth'-didn't have a definitive diagnosis but thought it was either a meningocele or a demoid cyst.
The whole atmosphere surrounding Elizabeth's birth and birth defect was one of "we are going to do our best", that it would be difficult to have a lot of hope for her survival. They actually told us not to plan to take our baby home and not to become really attached to her!!!!!!!--a philosophy that is totally opposite of what we do today with premature and birth defect babies. We didn't talk about the great need for "bonding" as that philosophy had not yet been written either.
Dr. McIntire, our pediatrician, came to see me and said he felt our baby had a sacrococcygeal teratoma and would need surgery. He suggested taking Elizabeth to Lincoln, Nebraska where a neurosurgeon, Dr. Gogela, could evaluate and operate.
During your hospitalization, you were in an isolate in the new born nursery (no NICU's back then)and you had to lie on one side or the other because of the tumor. It took tow nurses to turn you from side to side and it was impossible to hold you in our arms due to the tumor mass. After several days, you developed a staph infection on the teratoma, Dr. McMilllan had nicked the skin of the teratoma when you were birthed and these small areas became infected. Infections were all treated on the Isolation Unit of the hospital, a separate wing. Because of the need for 24 hour care, we hired 3 special duty nurses to care for you in 8 hour shifts. Up until that time I had not held you and only touched you once or twice through the isolette sleeve. I would go to the nursery window to look at you. It was impossible to hold you because of the fragility and size of the teratoma. I finally got over my ileus, and was allowed to go home, but Elizabeth had to stay in the hospital. Dale and I stayed with Grandpa John and Grandma Martha in the big house in the country so she could take care of me. We would travel to the hospital daily to see you.
You grew and gained weight and at 3 1/2 weeks the Dr. felt you could withstand surgery. We got a call from the Dr. I had worked for, who said he had spoken to Dr. McMillan and they felt in consult with Dr. Gogela and a general surgeon who was very skilled, Dr. Weber, could do the surgery. We had no pediatric surgical specialist as we do now, in our small town of Hastings.
We agreed, and the forpart of October we awoke early. Surgery was scheduled for 7am. It was foggy that day and Dr. Gogela had a difficult time getting to Hastings because of the weather--and drove to the hospital to see Elizabeth before the surgery. Of course, we were praying constantly and my recollection of surgery is that you were so tiny and frail- your dad and I sat in the waiting room for what seemed like hours. Dr. Gogela finally came out of surgery and said that the diagnosis was teratoma and no apparent nerve involvement or spinal cord trauma was found. You had two complete blood changes. You went into surgery weighing over 9 lbs and when the tumor was removed you weighed just over 5 lbs. so the bulk of the tumor was 4 lbs!!!!!! But we could now hold you despite the big dressing over the large incision on you buttocks.
you were taken to the pediatric ward with all sorts of tubes and cut downs in your veins and continued to have special duty nurses. The first night after the surgery, your dad and I went home but were called back to the hospital in the middle of the night because your heart was not functioning properly. The Dr. placed you on a drug called lanoxin to slow and strengthen your heart, and after that you continued to gain weight and grow well. When you were about 6 weeks old they told us you were well enough to go home. I remember being scared of the prospect. YOu had developed a phlebitis in your leg were the "cut-down" had been placed. I felt very inadequate, even though I was a nurse. But we joyously took you home and I think this is where "Your" story begins.
ADDENDUM: Prior to my pregnancy, I worked as a nurse on a general medical-surgical unit and in a Dr's office. I did handle many medications and at the time they were not dose packs. Once I administered nitrogen mustard for cancer. We never wore gloves for protection. I also handled many different crystals and liquid meds in the Dr's office: e.g. cocaine, alcohols, etc. I was a moderate smoker and drank only socially during my pregnancy. Your father had been a jet pilot in Korea and a member of the Nebraska Air National Guard. He was a member of an air to ground gunnery team in the NANG that flew close to an area in the western part of the U.S. that had been used as a testing ground for nuclear weapons.
There was no history of birth defects in either family. There are, however, twins.
thanks for this opportunity to tell my mothers story. I will in the next few days, go through them medical records that I have and give you the exact size of the teratoma Love to all- Elizabeth.
