Welcome to the March Issue of Glen Cove Computing News. This issue's feature article A Father's Story is a big departure for this newsletter. The vast majority of articles I have written for this newsletter have been technology or humor based. As many of you may know from our Adventures in Oz site, my wife Andrea became pregnant with our first child last October. This past month Andrea suffered a miscarriage at 21 weeks. While this isn't a typical article for a Internet newsletter, I feel that it's important to provide some hope and information to others that may be going through a similar situation. The Internet has played a big role in the healing process and recovery from our daughter's death. For those of you who are looking for a technology based article, I'll be returning to that subject next month. In this issue of Glen Cove Computing News you'll also find:
"There appears to be a problem with your baby." With those words our perfect life had taken a detour. Four months earlier when we had found out that Andrea was pregnant with our first child, we had been overjoyed. Here we had just started trying the month before and already Andrea was pregnant. We had friends and relatives who had been trying to have a child for years without success. We felt totally blessed by our luck, but a little guilty about having it come so easily.
For the first month of Andrea's pregnancy there were a lot of jokes about my being Italian and the fact that it had only taken one month of trying to get pregnant. We were busy picking out baby names and Andrea's mother was already buying furniture for the nursery. During that time Andrea had continued to bleed, but the doctors weren't overly concerned about it. After a month and a half of bleeding our doctor ordered a hormone test to put our minds at ease. During pregnancy the hormone level normally doubles every two days. Andrea went in for the first test on a Tuesday and then came back for the second test that Thursday. By Friday we were told that it was bad news. The hormone levels had dropped instead of rising. This usually means a miscarriage is eminent. Our doctor immediately sent Andrea to a hospital for an ultrasound to determine if the baby was still alive. At the same time she scheduled a D&C as she was afraid that the baby had already died.
Amazingly the ultrasound showed a healthy baby with a strong heartbeat. After this incident we swore off all hormone tests for good. We decided to trust our faith and accept whatever happened. As a precaution our doctor immediately ordered bed rest for Andrea until she was out of the first trimester. If Andrea could carry the baby into the second trimester, there was a good chance that she wouldn't miscarry. For a month and a half Andrea followed the doctor's orders and stayed off her feet until she was one week into her second trimester. At that point we figured that we had dodged a bullet and that everything was going to be all right. We were looking forward to finding out the baby's sex at the 18 week ultrasound. Andrea's mother flew up from Southern California to be with us. She and I had a little bet going about the baby's sex. I was convinced it was a girl, while she was certain it was a boy. It turned out that I was right, but none of that seemed important at that moment when we heard that there was a problem with our baby.
Our doctor was away on her honeymoon, so we were meeting with her partner for the first time that day. The technician had already done the ultrasound and the doctor was running late. Everything on the ultrasound had looked fine to us, although we couldn't tell the sex as the baby's legs were crossed. I was anxious to get to a meeting that I was going to be late for and didn't want to wait. My wife convinced me to wait another half hour and the doctor arrived ten minutes later. She immediately brought us into the ultrasound room and explained that there was a problem with the baby. There was a cystic hygroma or pocket of fluid on the back of the baby's neck. She explained very quickly that this was a sign of a birth defect of some sort, but didn't go into details.
We were immediately sent to a perinatal clinic that dealt with high risk pregnancies to meet with a genetic counselor and have a level II ultrasound done. There we spoke with Joan, a genetic counselor, who explained a cystic hygroma is usually evidence of a chromosomal birth defect like Down or Turner's Syndrome. There was also the possibility that the cystic hygroma could have been caused by a virus or heart problems. At this point we figured that we could handle whatever happened, as long as the baby survived. We were anxious to get the second ultrasound over with so we could find out how serious the problem was.
During the second ultrasound the doctor pointed out to us additional pockets of fluid that were in the baby's abdomen and chest cavity. Measurements of the baby's limbs were taken and found to be underdeveloped. To get a definite diagnosis my wife had to undergo an amniocentesis. Amniocentesis is a procedure whereby fluid is extracted from the amniotic sac. The amniotic sac is the fluid-filled structure inside the pregnant uterus within which the baby lives. Fetal cells, proteins, and fetal urine freely move within this sac. During amniocentesis, fluid is removed by placing a long needle through the abdominal wall into this sac. Once the needle is in the sac, a syringe is used to withdraw the clear amber-colored amniotic fluid, resembling urine. The fluid can then be sent for evaluation of fetal lung maturity, genetic evaluation, evidence of spina bifida (a birth defect in spinal cord development), the presence of infection, or chromosome analysis. The fluid also contains proteins, minerals and other compounds that can be tested, and may take 1 to 10 days to perform. We were told that the results of the tests would be available in 7-10 days and sent home.
The next few days were a blur. I decided not to tell my family and friends about the problem until we had the results of the amnio. I didn't want to try to answer any questions that I didn't have answers for. Andrea's mother had been with us during the ultrasound, so she and the rest of Andrea's family were the only ones who knew what was going on. We decided that we should go for a second opinion, as we weren't satisfied with the explanation that was given to us by the doctor at the perinatal clinic. After much wrangling with our medical group we made an appointment with another doctor connected to the clinic. Andrea had her third ultrasound of the week and this time the doctor was more forthcoming with details. The cystic hygroma was just one part of the problem. The pressure from the fluid in the chest cavity was preventing the baby's lungs from developing. The doctor told us that there was no hope that the baby would survive. Most likely Andrea would miscarry within the next 2-3 weeks. If a miscarriage didn't occur than the baby would either be stillborn or would die immediately upon birth. While the news hit hard it was better than not knowing. We still had to wait for the results of the amnio, but we were starting to realize that there wasn't going to be a happy ending.
Eight days after the amnio the results came back. It was Turner's Syndrome which meant that it was a girl. Turner's syndrome affects only females and is caused by a missing X chromosome. It affects 1 out of 3,000 live births. There are many manifestations of this syndrome, but the main features are short stature, webbing of the skin of the neck, absent or retarded development of secondary sexual characteristics, absence of menstruation, coarctation (narrowing) of the aorta, and abnormalities of the eyes and bones. Turner's Syndrome babies are often carried to term and live normal lives. Because of the lack of development in our daughter's lungs there was no chance of this happening to us.
After the amnio results came back, Andrea and I had to make the decision that we had been dreading. If she continued to carry the baby and miscarried, she could suffer severe hemorrhaging. If she carried the baby to term it would either be stillborn or die immediately upon birth. I have always been Pro-Choice, but never thought I would be faced with a decision to terminate a pregnancy. Never say never. Intellectually we knew it would be the right decision, but emotionally we weren't sure if we could make that decision. I felt strongly that if Andrea's safety was in jeopardy, there was really no other choice to make. Andrea had a harder time of deciding. We would make a decision together only to have some well meaning friend or relative call with horror stories about similar pregnancies that had been terminated, only to find out later that there was nothing wrong with the baby. Others accused us of taking the decision out of God's hands which hurt us deeply as we are both Christians. It took a call from my wife's doctor to convince her that it was the right thing to do. There was zero chance that the baby would survive and zero chance that the diagnosis was incorrect. The risk to my wife was greater the longer she carried the baby. If the baby did go to term she would have to have a c-section. If the baby was stillborn she would have to go through labor to deliver a dead child. If she miscarried there could be serious complications. It was the hardest decision that we have ever had to make and we prayed that it would be taken out of our hands.
We scheduled the DNE for that Saturday. Our medical group only had one doctor in the area who could do the procedure and he was 45 minutes away. We went in on Thursday to meet with him for the first time. He did yet another ultrasound and found that our daughter was dying. The fluid in the abdomen and chest cavities had become worse. He doubted that she would survive another day. As horrible as it may seem to some people we prayed that she wouldn't survive until Saturday. We couldn't bear to make the decision that would end our daughter's life. The next two nights were sleepless ones for both of us. Luckily we took turns having emotional breakdowns. One of us was always strong when the other was overwhelmed.
Saturday morning we woke at 5 am to get to the hospital for the procedure. We drove down to the hospital in silence. When we got to the Pre-op we asked the nurse to check and see if our daughter was still alive. She tried for 15 minutes to find a heartbeat, but there was none. Our daughter had died sometime after the visit to the Doctor's office on Thursday. What we had prayed for had come true. The decision had been taken out of hands. It didn't make it any easier to lose our daughter, but it allowed us to be free of the guilt that terminating the pregnancy ourselves would have brought.
It's now been almost a month since all of this happened. My wife quickly bounced back from the miscarriage physically. Emotionally it was hard for the first couple of weeks, as the hormone levels in her body dropped and she experienced something similar to postpartum depression. We went to a counselor for a couple of weeks after the miscarriage who felt that we were handling the situation as best as could be expected. A number of things helped us to get through this time together. One is that we have a great support system of friends and relatives who came through for us when we needed them via phone calls, emails, and cards. Another is the resources that we found on the Internet on perinatal loss. I've listed some of the resources that we used below. I hope they'll be as helpful to others going through this. But most of all, the thing that got us through the death of our daughter was that we had each other. After three years of marriage I have a newfound appreciation for my wife's strength and love. A tragedy like this can either tear apart a marriage or bring it closer together. I thank God that our marriage has grown stronger and that we are together.
This article is dedicated to the memory of Sydney Faith Martini who brought joy and love to her parents.
The Internet Site of the month for March 1997 is Hygeia... An Online Journal for Pregnancy and Neonatal Loss. Hygeia is an Internet Website committed and devoted to documenting and helping heal the grieving and other aspects of loss related to miscarriage and demise of newborn infants and children, due to any cause.
Hygeia began as a Private Bulletin Board System devoted to the subject matter of grieving and loss as it pertains to pregnancy loss, miscarriage, neonatal loss, poor neonatal outcome, voluntary terminations of abnormal pregnancies, and other life-threatening illnesses. With the exponential growth of the Internet, it has expanded its scope and the present version of Hygeia is on the World Wide Web.
The Hygeia Web Site provides the following comprehensive features:
I first visited the Hygeia site after being told that there was a good chance that my wife was going to suffer a miscarriage. It is without a doubt the best site on neonatal loss on the Internet. After the miscarriage my wife, who is not a computer person, spent three days reading the information and stories on Hygeia. Hygeia might not help everyone, but it was a godsend for my wife and I. I hope others in our situation can benefit from it also.
Thanks to Gabe Martin for placing his comic strip in the public domain. See more of Gabe's work at
The Internet Technology of the month for March 1997 is Hit List 2.5 from Marketwave. Do you need professional-quality web site analysis tools to satisfy immediate needs but don't have the money to purchase one? Hit List Standard 2.5 is your answer. Hit List has ready to run reports for all types of information, including most/least popular pages, most common visitors, total visitors, and how visitors are finding your site. All versions of Hit List create reports based on cookie information. The Enterprise and Pro versions of Hit List report advertising effectiveness, both the advertising on your site and your advertisements on other sites. In just a few minutes you can configure it to run daily reports for all of your virtual domains, put the HTML reports in the appropriate directories, and even email the reports as Microsoft Word documents.
I've actually worked with two web site analysis packages recently. I prefer the interface of the other package (WebTrends), but you can't beat the price for Hit List 2.5 standard. How does free sound to you? Compare that to WebTrends $299 price tag and you can see what I like about it. In terms of functionality the programs are very similar and either one is a necessary tool for a webmaster. If WebTrends ever comes out with a free version I'll write it about it in this newsletter. In the meantime you can download Hit List 2.5 standard from Microsoft's SiteBuilder Network.
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