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My name is Mary-Dorothy Line. I am here today to oppose H.R. 1833. This legislation would outlaw a compassionate medical procedure that helped me and my family through the most difficult situation in our lives. I have come to Washington to oppose this legislation to ensure that it is available to other women and families in the future.
I am a registered Republican and a practicing Catholic. My husband, Bill, is a consulting engineer. We live in Los Angeles, California. Bill and I got married while in college. We had been married almost 14 years before we decided to start our family. Since having children was not a decision we took lightly, we waited until we were financially, emotionally, and spiritually prepared. In April of 1995 when we found out I was pregnant, we were thrilled. We waited to tell my father and our other family members until Fatherþs Day -- an extra special Fatherþs Day present.
The first four months proceeded normally. Dr. Pamela Lui, an OB/GYN at Northwestern University Hospital in Chicago was my doctor and I followed her instructions exactly. I read everything I could about pregnancy and parenting. We debated having an amniocentesis, but Dr. Lui said that it was not necessary due to my age (under 35) and no family history of genetic disorders. But she did recommend an alpha-fetoprotein (AFP) test which is routinely performed in most pregnancies to screen for neurological anomalies such as spina bifida. The nurse who drew my blood for the AFP said she would call me with the results in about two weeks, but if there was a problem, the doctor would call.
When Dr. Lui called I was not thinking and started chatting away to her until I remembered what the nurse said; my heart started pounding. Dr. Lui told me that the AFP showed an elevated level of something which might indicate that there was a problem with our baby. She advised us to have an amniocentesis even though the chances were still great that everything was fine.
My husband and I talked about what we would do if there was something þabnormal.þ We quickly decided that we are strong people and very much in love and, that while having a mentally or physically disabled child would be hard, that it would not be too hard. But we also decided that we needed to know what we were dealing with, so I made an appointment with a perinatalogist at Northwestern Hospital to have an amniocentesis. During the ultrasound for the amniocentesis, the doctor noticed that the babyþs head was too large and that there was a lot of fluid in his head. He told me to have another ultrasound in two weeks to check the progression.
I had no idea what all this meant so I rushed to Dr. Luiþs office and asked her to explain. She drew some pictures and explained that the condition was called hydrocephalus; that in every personþs head there is fluid to protect and cushion the brain, but if there is too much fluid, the brain cannot develop. I called my husband at work and had him taken out of a meeting to ask him to meet me right away. I explained everything to him. He said that everything would work out and not to worry. We actually believed everything would be OK in two weeks.
I told my father that we might have a problem, but he also said that everything would be fine since there are no genetic problems in either Billþs family or mine. When we told my mother-in-law, she said she would pray for us. We are all Catholic and go to church every week. When we have problems and worries, we turn to prayer. So, we prayed, as did our parents and grandparents.
To complicate matters even more, while these problems were occurring Bill and I were in the process of moving from Chicago to Los Angeles for my husbandþs job. As we were driving across the country, we had a week to talk and think and pray.
We arrived at our new apartment in Los Angeles on Sunday afternoon to a letter from Northwestern Hospital in Chicago saying that the amniocentesis results were perfect. We were so relieved. I knew that there was still a chance that the excess fluid on the brain was a problem, but we had been praying so hard and wanted this baby so much that we truly believed that everything was going to be fine. Since it was Sunday, we went to church and thanked God. We went to bed happy that night; our worries were over.
Monday was my husbandþs first day of work at his new job. I had an appointment scheduled with a perinatalogist from Santa Monica Hospital and Cedar Sinai Hospital for another ultrasound. Bill insisted on coming to the ultrasound, even though I told him that he did not need to be there -- after all, it was his first day of work. But I did think it would be exciting for him to see our baby on the ultrasound. I was 21 weeks pregnant.
The doctor, Dr. Connie Agnew, asked why we were there. We explained what the doctors in Chicago had told us and she said she would make her own diagnosis. After about a minute, she told us that she did not have good news; it was a very advanced textbook case of hydrocephaly. My husband almost passed out. We asked what we could do and she said there was nothing we could do. A hydrocephalic baby that advanced has no hope. The baby would most likely be stillborn. She recommended that we terminate the pregnancy.
Our ob/gyn in Los Angeles, Dr. William Frumovitz, recommended a second opinion. Dr. Frumovitz sent us to a wonderful, compassionate doctor at Cedar Sinai Hospital, Dr. Dru Carlson. She stayed late to see us and confirmed our worst fears. She asked us to bear with her as she looked at our baby to see if there were any other problems besides the hydrocephaly. We sat there and watched as she examined our baby, the baby we knew we would never have. She worked very hard for 45 minutes and then told us that in addition to the brain fluid problem, the babyþs stomach had not developed and he could not swallow. We asked about in-utero operations and drains to remove the fluid, but Dr. Carlson said there was absolutely nothing we could do. The hydrocephaly was too advanced. Our precious little baby was destined to be taken from us. Dr. Carlson also recommended that we terminate the pregnancy.
My poor husband called our parents and grandparents and told them the awful news. My father started crying; we were all crying. This couldnþt be happening to us. But it did happen to us.
Doctors Frumovitz, Agnew and Carlson referred us to Dr. James McMahon. They all said that the procedure that he performs, the intact dilation and evacuation (Intact D&E), was the best and safest procedure for me to have. The multiple days of dilation would not be traumatic to my cervix. This was important to preserve my body and protect my future fertility. They knew that that was very important to my husband and I since we really wanted to have children in the future. Dr. Carlson said that with this procedure they would be able to perform an autopsy to determine if we were likely to face similar problems in future pregnancies. With no hope for this baby, our doctors were recommending the best option, with hope for the future.
Dr. McMahon and his staff were the kindest people you could ever meet. They explained the intact D&E procedure to us. Dr. McMahon used ultrasound to examine the baby, in case the three other specialists were wrong. They were not.
The dilation took three days and two trips a day to his office. These were the worst days of our lives. We had lost our son before we even had him. After the dilation was complete, I was put under heavy anesthesia. A simple needle was used to remove the fluid from the babyþs head, the same fluid that killed our son. This enabled his head to fit through my cervix.
My husband and I are disturbed by the way this compassionate medical procedure has been portrayed by members of Congress. We throughly investigated this procedure before we had it. Every specialist told us that it is a safe and compassionate procedure. We were very informed and educated before making this decision. What they were saying in Congress bothered us so much that I went back to Dr. McMahonþs office to try to figure out why this procedure was being misrepresented. Our anger at how this procedure was portrayed is why I am here today.
This is the hardest thing I have ever been through. I pray that this will never happen to anyone ever again, but it will and those of us unfortunate enough to have to live through this nightmare need a procedure which will give us hope for the future. With this procedure families can see, hold and even bury their babies. In addition, the baby can be visually or clinically studied by specialists to determine if there are genetic abnormalities that can be avoided in future pregnancies. I am lucky that I was able to have this procedure. Because the trauma to my body was minimized by this procedure, I was able to become pregnant again, only four months later. We are expecting another baby in September. Dr. McMahon and the intact D&E procedure made this possible for us.
One of the first things Dr. McMahon told us was that his job was not done until he and his staff receive a baby picture of our next child. At the time, I couldnþt imagine becoming pregnant ever again. A month later, it was all I thought about. I desperately wanted to be pregnant and finally start our family. This procedure gave us hope. Please donþt take that way from the families who will need it after us. You must leave medical decisions to the families and the medical experts who have to live with the consequences. It is not the place of government to interfere in these very private, personal decisions.