We have several reasons for wanting to post Victoria's story on the Internet. Primarily, we hope that it will help other parents who are told that their unborn child has Trisomy 13 or some other chromosomal problem. We also hope that our story will help friends and family of these parents better understand some of the issues and emotions they will be facing and, with such understanding provide better support to the parents. Perhaps some will find inspiration in the strength we found in God. We hope this will also serve as a fitting tribute to our precious daughter, Victoria, who touched so many lives in her short life.

In 1996, we decided we were ready to start a family. In December we were thrilled to discover I was pregnant. On Feb. 7, 1997, I had a miscarriage. We were devastated. We knew that the miscarriage was part of God's master plan, but we, as humans, just did not know why it happened. In May of 1997, we started trying to get pregnant again. Month after month we were disappointed as pregnancy eluded us. For a year and a half we endured fertility drugs, medical procedures and surgery in order to get pregnant again. We realized that even with the best infertility treatments, you can't get pregnant without God. It is quite frustrating for some of us impatient humans when our schedule is not the same as God's. We had to keep reminding ourselves that if and when we got pregnant again it would be according to God's perfect plan and schedule. I finally got pregnant again in November 1998. I can't express the joy we felt when we saw our daughter's heartbeat for the first time on the ultrasound. Christmas was so happy for us because we knew we were finally going to have the family we'd hoped and dreamed of and that next Christmas we would be celebrating with our new baby.

The infertility doctor monitored me closely until the 10th week and then he released me to my Obstetrician. When I called to make an appointment with my Obstetrician I was told she had moved to Vermont and I would have to see one of the other seven doctors in the practice. My husband and I both felt an unexplained pulling that I should change to the Obstetricians my sister-in-law had used. We immediately felt comfortable with these doctors and felt that we would receive more personalized care from them.

In March my AFP test (a routine test that screens for spina bifida and Down’s syndrome) indicated a slightly increased risk that the baby had Down’s syndrome (1 chance out of 135). Our Obstetrician recommended we have a high resolution ultrasound possibly followed by an amniocentesis. We were really torn as to whether we should have an amniocentesis. We did not want to risk a miscarriage caused by an amniocentesis. On the other hand, we wanted to be prepared if our child had Down’s syndrome. We decided to go ahead and have the high resolution ultrasound (which can sometimes detect some characteristics of Down’s syndrome), but I was still unsure about having an amniocentesis. While we were waiting in the doctor’s office prior to the ultrasound I remember praying for guidance as to whether we should have the amniocentesis. The ultrasound showed that our baby had several problems including a large omphalocele (a defect in the abdominal wall that leaves organs outside of the body covered by a sac), a possible heart defect, and an increased nuchal fold on the back of her neck (usually associated with a chromosomal abnormality). Based on these problems, the Perinatologist told us he was certain our baby had a chromosomal problem, and that we needed to do the amniocentesis in order to determine the type of problem. The Perinatologist explained to us that our baby probably had Down’s syndrome, in which case she would probably live and could, hopefully, have a fairly good quality of life. He explained that the omphalocele and heart defect could be corrected with surgery after the baby was born, but that the baby might not survive either operation. He also told us our baby might have Trisomy 13 or Trisomy 18, very rare chromosomal conditions that are "incompatible with life". There was no doubt now; we needed to have the amniocentesis. Both Rob and I were too shocked to say anything. I remember tears running down my face as I was waiting for the doctor to finish the amniocentesis. We were told we should have the results within a week. Before he left, the Perinatologist held my hand and told us that at times like this you have to count your blessings. I just sat there, unable to comprehend all that he had just told us. We drove home in a daze, too numb to even talk.

Soon after we got home, a friend called to see how the appointment went. After I told her, she got mad and said "how can God do this to you, after all you’ve been through?" I told her I wasn’t mad, and that somehow this was part of God’s plan. She told me she would pray for us. That’s when I lost it and just started crying. I told her I didn’t even know what to pray for; if the baby had Down’s syndrome she might live but the surgeries might kill her or her quality of life might not be good; if she had one of the other chromosomal problems she would not live, but at least she would not suffer a poor quality of life. The best we could hope for was that she would be a highly functional Down’s child and that she would survive the surgeries to correct the omphalocele and heart defect. Rob called his parents and broke the news to them. They offered to come over to try to comfort us, but we just really needed to be alone to sort through our thoughts. They came over the next day. I didn’t think I wanted to be around anyone else, but it really helped to have them with us. They comforted us and cried with us. It wasn’t just our baby, it was also their grandchild. I couldn’t even call my family to tell them. How do you tell someone that your unborn baby has severe problems?

The next week was a blur. Rob went back to work. My in-laws tried to keep me occupied so I didn't just sit around thinking about it. Finally, a week later we received the news that our baby had Trisomy 13. We could not believe it. How could this happen to us? We started searching the internet, trying desperately to find information about this chromosomal abnormality. We learned that Trisomy 13 is a very rare abnormality, occurring in approximately 1 in 5,000 live births. This statistic is highly misleading, however, because most babies with this abnormality are miscarried in the first trimester, and if they survive the first trimester, many parents terminate the pregnancy when they discover the baby has Trisomy 13. We also learned that if a baby with Trisomy 13 is live born, most die during the first three months of life, and more than 95% of these babies die during the first year of life. The length of survival depends, in large part, upon the extent and severity of the baby's birth defects that are associated with Trisomy 13. Typical birth defects involve congenital heart disease, brain anomalies, scalp defects, cleft lip and palate, extra digits (toes and fingers), small birth size, openings along the spine, eye problems, abnormal ears with apparent deafness and severe mental retardation. Common problems in children who survive include apnea, seizures, and slow growth, and feeding difficulties. What little information we could find was absolutely heart breaking.

A few days later we met with the Perinatologist. He basically confirmed the information we had already found. He told us it was unusual that the baby had survived this long and that it was highly unlikely she would survive past the 30th week (we were in the 17th week of the pregnancy at the time). In the unlikely event that she was live born he told us she would not live more than a few days. He then told us our only option was to terminate the pregnancy. We told him we could not terminate our baby's life. He told us it would be very difficult, particularly on me, to allow the pregnancy to continue. I asked him whether this pregnancy posed any risk to my life and he indicated that it posed no more risk than a normal pregnancy. The only unique physical problem I might encounter was fluid build-up from the omphalocele which would make it difficult for me to breathe. It would be easy, however, to drain the fluid if it became a problem. He said I could develop gestational diabetes or high blood pressure during the pregnancy, but these are risks associated with any pregnancy. I felt I had accepted these risks when I became pregnant. Looking back I realize that Rob and I did not even discuss the possibility of terminating the pregnancy. It simply was not an option for either of us. We felt very strongly that God created our baby and he would take her when he was ready. I am grateful we both felt so strongly about this. It would have been much more difficult if either of us was not completely in support of going forward with this pregnancy. The Perinatologist reluctantly accepted our decision and recommended that we see our Obstetrician once a week to see if the heart was still beating. If our baby lived, he recommended that we not proceed with either the operation to correct the omphalocele or the heart defect because they would be very traumatic and painful for our baby. He recommended that we just give her "compassionate care". This sounded good to us, but we didn't think to ask him what this meant.

The Perinatologist also told us there was only a slightly increased risk that our future children would have Trisomy 13. He explained that Trisomy 13 can be an inherited trait but usually it is just a random occurrence. Our initial reaction was that this didn’t really matter because we didn’t intend to get pregnant again. We had already miscarried a baby, gone through countless infertility treatments and now this. We simply could not take any more heartbreak. We thought God just did not mean for us to have biological children. We have since had a change of heart and will try again.

We were truly blessed with caring and compassionate Obstetricians. They respected our decision to continue the pregnancy and were committed to helping us in any way they could. We were so glad that we had switched to these doctors. It was a good thing we liked our Obstetricians because we had to see them every week to check if the heart was still beating. Each week they checked for the heartbeat while we held our breath wondering whether this would be the week they couldn't find it. The doctors told us it was possible that I could go into spontaneous labor at any point. Consequently, Rob had to carry a pager with him wherever he went and our family suspended their travel plans because they did not want to be out of town if I went into labor.

We prayed every day that God would give us the strength to get through this and that he would not let our baby suffer. Initially, there was a part of me that wanted God to end the pregnancy quickly because I knew the longer I carried our baby the more attached to her we would become. But, as much as we knew we would be torn apart when she left us, we just could not stop that natural love parents feel for their child. As time passed, I stopped dreading the day she would be taken from us and, instead, came to cherish the days we had with her. I was so happy whenever she moved or kicked because it was a joyful reminder that she was still with us. Those little kicks were also important to me because I knew she probably would not move outside the womb. We were grateful for whatever we could experience with her. When Rob played his guitar for her she would move around as if she were dancing (we were pleasantly surprised by this because we had read that most Trisomy 13 babies are deaf). I said tearful good-byes to our daughter countless times because I didn't know whether she would be with us the next day.

We asked everyone we knew to pray for our baby. I cannot even begin to count all the people who prayed for her. There were literally people from all over the country praying for her. People we did not even know (like friends of friends and even an order of nuns in Cleveland, Ohio) were praying for our baby. The thought that all these people cared enough to pray for our baby and us really touched us and gave us strength.

We clearly were not alone throughout this experience. We received incredible support from family and friends. One of the most helpful things they did was to keep us distracted. My mother-in-law and sister-in-law would take me shopping or out to lunch. They frequently invited us over for pizza or hamburgers. It was important for us to be around people who loved and cared for us and we were grateful for any reprieve from the constant concerns about our baby. Rob's brother even offered to come to our doctor appointments with us because he knew how stressful they were for us. Many friends sent cards and notes that were quite touching. Other friends routinely called to see how we were doing and to lift our spirits. We noticed that some of our friends seemed to avoid us, perhaps because they felt overwhelmed by our situation and did not know what to do or say or because they were just too uncomfortable with it. Instead of thinking about the lack of support we received from some friends, we decided it was far better to focus on the immense support we were receiving from others. We cannot begin to express our gratitude or appreciation for all the many ways our family and friends provided support to us during this difficult time. God truly blessed us with wonderful family and friends.

During this time some thoughtful friends gave us two books that we found very inspiring. In "A Deeper Shade of Grace", the author, Bernadette Keaggy, describes the heart wrenching story of how she lost five babies, but through it all she found a deeper love for God. The book "When God Weeps; Why Our Sufferings Matter to the Almighty", by Joni Eareckson Tada and Steven Estes, tackles tough questions about pain and heartache and why God allows suffering in this life.

The days turned into weeks and the weeks turned into months. The Perinatologist told us our baby would probably die by the 30th week of the pregnancy. When we went to the Obstetrician the 30th week and found that her heartbeat was still strong, we began to think that perhaps she might just make it. Two weeks later my stomach started hurting. I didn't think I was having contractions because the pain was constant (it didn't come and go). Dr. Long told us we should go to the hospital to check it out. By the time we got to the hospital, the pain was coming and going and I realized I was having contractions. The nurse hooked me up to the monitor and confirmed that I was having strong contractions. The nurse then started preparing for the birth. She began asking a lot of questions about how we wanted our baby cared for after she was born. The Perinatologist had suggested that we give our baby "compassionate care" but we had not thought about what this meant. We were woefully unprepared to make the decisions about the extent of life saving care that should be given to our daughter. Did we want them to recessitate her if she wasn't breathing? Did we want them to use ventilation tubes to help her breath? Did we want her to stay with us in the room or in the neonatal nursery? We were able to delay making these decisions. While the contractions were very strong and regular, they were not dilating my cervix, consequently, I did not deliver the baby that night. The next morning, Dr. Long told us we had three options; induce labor with drugs, stop the contractions with drugs, or do nothing. Rob and I had maintained throughout this pregnancy that God would take our daughter when he was ready, therefore, we decided not to take the drugs to induce labor or stop the contractions. Dr. Long didn't know what we should expect because in a normal pregnancy they would always either stop the contractions or induce labor. He had never encountered a situation where the parents let nature (i.e. God) take its course. They continued to monitor the contractions, but since my cervix still was not dilating Dr. Long let me go home the next night. Dr. Long suggested I stay off my feet as much as possible. After a week, the contractions became weaker and less regular.

This "dry run" made us realize how unprepared we were for the delivery of our baby. We promptly made an appointment with Dr. Ken Kupke, the Neonatologist who would be taking care of our baby if she was born alive. We were very impressed with Dr. Kupke. It was obvious that he was very compassionate, as well as highly competent. He was the first person we talked to who had any experience with Trisomy 13 babies. One of the first things he asked us was whether we had chosen a Pediatrician. I just gave him a blank stare. Of course we had not chosen a Pediatrician – everything we had read and everything the other doctors had told us indicated that our baby would not live long enough to need a Pediatrician. He said we needed to be prepared for the possibility, although slight, that she would live a short while. Dr. Kupke also told us it was not out of the realm of possibility that we might even be able to take our baby home. Even our baby’s heart defect and omphalocele would not necessarily preclude us from taking her home. Dr. Kupke didn’t want to get our hopes up, but at the same time, he said he had dealt with several parents who, like us, had been told their baby would not leave the hospital, and then when they realized they would be taking their baby home they were terribly unprepared. My mind started racing. What if we could bring our baby home? Our baby would have significant special needs; would we be able to care for her ourselves? Dr. Kupke assured us that he would not release our daughter from the hospital until he was confident that we knew how to care for her (i.e. change the dressing on the omphalocele, feed her intravenously etc.). I asked Dr. Kupke if I should prepare a nursery? He told me to wait because if we could bring our baby home she would first stay in the hospital at least two weeks which would give me time to prepare the nursery. Rob then asked how long we could expect our daughter to live. Dr. Kupke told us it would depend on the extent of her birth defects, but the oldest Trisomy 13 baby he had been involved with lived for 6 months. We then discussed the care to be given to our baby. We explained that the most important thing to us was to minimize her pain. We did not want to cause her pain or prolong her suffering for our own selfish desire to have her with us. Dr. Kupke understood this and assured us that they could make her comfortable. He recommended that she be fed intravenously (Trisomy 13 babies generally cannot eat on their own), and that she be given antibiotics if she developed an infection (a common occurrence with an omphalocele). He felt our baby should not be subjected to surgery to correct either the omphalocele or the heart defect because the surgery would be very painful and would probably kill her. He also recommended no recessitation if her breathing failed because they usually have to pound on the baby’s chest (which is painful). He also indicated that ventilation tubes used to help breathing are painful for babies. At least now we had a basic plan as to how our baby should be cared for if she were live born. It was also comforting to know that our baby would be cared for by a doctor who was very compassionate and seemed to fully understand our priority of minimizing our baby’s pain.

After our appointment with Dr. Kupke, I remember driving home thinking about the possibility that we might bring our baby home. I started to panic. What if I could not care for her? What if I made a mistake like tearing the omphalocele while changing the dressing? Then a calm came over me when I realized that if we were meant to take our baby home then God would equip us to handle it. I didn't have to worry about the nursery either, because when I told our friends and family that there was a slight possibility we could take our baby home they said they would prepare the nursery for us. They would make sure we had everything we needed. We tried not to get our hopes up because we knew there was only a small possibility we would bring her home, but we couldn't help getting excited that it might happen.

While discussing the possibility that our baby might live for a short while, a friend delicately asked if we had good insurance. I knew what she was getting at; if our baby lived she would need a lot of medical attention which would cost a lot of money. We did have good insurance, but it could still cost us a lot of money. Rob and I had already discussed this issue and decided that God gave us our money and if he wanted us to use all our savings for the care of our baby then we would gladly do so. Caring for our daughter would be a lot better use of our money than a new car or other material objects.

It was very difficult not knowing what the future had in store for us. Would I go into labor tomorrow? Would we find her heartbeat the next time we went to the doctor? Would our baby be born alive? If she were alive, what would be the extent of her birth defects? Would we be able to take her home? How long would she live? Throughout this experience, we were ever mindful that we were not in control - God was. We just had to take it one day at a time and trust in God that it would all work out.

We knew that even if she were born alive we had to be prepared for her death. We asked Rob's parents to make arrangements with the funeral home and the priest so that we would not have to worry about this during the difficult time after our baby died. We got 3 gravesites (for our baby, Rob and myself) next to Rob's grandparents. I also asked my mother-in-law and sister-in-law to buy a gown for our daughter's burial. If she lived long enough for a christening, we could use it for that instead. It was really important to me that she have something nice to be buried in, but it was too difficult for me to shop for it myself. I wanted someone who loved her to pick it out.

Thirty-six weeks into our pregnancy the Obstetrician told us that, much to his surprise, he thought we would make it to the due date. Everything seemed fine. My cervix still had not dilated. We even discussed what would happen if I went beyond the due date. The next week I noticed that I had not felt the baby move for a while. I told myself that this was normal (I had read in a book that toward the last few weeks of the pregnancy the baby does not have much room to move). When we went to the doctor (during the 37th week) he could not find the heartbeat. He did an ultrasound which confirmed that her heart had stopped. For twenty weeks we expected this, and now it finally happened. The doctor told us we needed to go to the hospital to induce labor.

We didn't talk much during the drive home to get our bag. I think we were both trying to sort through our emotions. We were obviously very sad and grief stricken, but we were also a bit relieved; relieved that our baby did not suffer, and relieved to finally know the outcome. We didn't have to wonder any more about what tomorrow would bring. We felt guilty about this feeling of relief, but what parent would want their child to suffer? What parent would want to watch their child's every breath knowing that it could be its last breath? It is difficult enough worrying about your child's future, but it is even harder when you know she will not live long. We would have given anything for our daughter to have been healthy, but she wasn't. We were grateful that at least she did not suffer.

When we got to the hospital they assigned me to a room in the old section of the building. I found this strange because they had just opened a new Labor and Delivery section. I realized later that the hospital purposefully assigned me to a room that was far away from other women delivering babies because it would be too difficult for me to be around the excited parents and crying babies. We didn't know what to expect during labor because we couldn't bring ourselves to attend childbirth classes. Even though I didn't really know what to expect, I wasn't worried about labor - God had gotten me this far, he would take care of me during labor too. At 5:00 p.m. the nurse started the IV to induce labor. The doctor told us that labor can take a long time when you have to induce it (sometimes up to 3 days for first babies). The doctor on call that night was Dr. Crawford Long, the father in the father-son practice. When Dr. Long checked me at 6:00 p.m. he said that since I was already partially dilated I would probably deliver around 10:00 a.m. the next morning. Rob's family and my brother came to the hospital to give us support and help us pass the time. Dr. Long checked me again at midnight and said my labor was going much faster than anticipated and that I should deliver around 2:00 a.m. Our daughter, Victoria Lynn, was delivered at 2:20 a.m. on July 23, 1999.

The nurse bundled Victoria up and gave her to me. She was so beautiful. She looked just like Rob. She had a bunch of black hair, Rob's cute little button nose and his chin. We had read that many Trisomy 13 babies have a cleft lip, extra toes and fingers, abnormal ears and other external birth defects. But our baby had none of these problems. God had kissed her. She looked like a normal, beautiful baby girl.

We really appreciated Dr. Long's sensitivity and compassion. He told us how beautiful Victoria was and stroked her face. When he went out to tell our family I was okay (they had stayed at the hospital all night to be with us), my sister-in-law said that he had tears in his eyes. This really touched me. Dr. Long is in his early 70's and has delivered thousands of babies, and here he was crying over ours. He is a truly caring physician who has not forgotten the human element of his profession.

Our nurse, Becki Mauache, was very sensitive to our feelings. She treated our baby like other babies; not like a dead baby that did not count. She told us how beautiful Victoria was. We got to choose a little outfit that Becki dressed Victoria in. Becki also gave us a lock of Victoria's hair and Victoria's foot and hand prints.

Becki told us we could keep Victoria with us as long as we wished. It really helped us to hold her and spend time with her. We kept her with us the entire time I was in the hospital. She looked so peaceful - just like she was asleep. We knew that her death while still in the womb was the best possible outcome. As much as we would have liked to hold her while she was alive, we knew that she would have been in pain and would have had to struggle for every breath. We also realized that as painful as it was to have a stillborn baby, it would be far more difficult to watch our baby die. Once again, God showed us his plan is far superior to ours.

We took a lot of pictures of our precious daughter. It may seem strange to take pictures of a baby that is no longer living, but we are so glad we did because they are the only tangible things we have to remember her by.

When Dr. Long came to check on me the following morning he told me I could leave the hospital whenever I felt like it. We decided it would be easier on us emotionally to be at home so we left the hospital that afternoon. We were exhausted and needed sleep. Over the next few days we spent a lot of time crying and holding each other.

We had the funeral three days later. The priest who had married us seven years earlier performed the funeral for our baby. We asked that only immediate family attend the funeral. We just were not ready to face a large crowd. Victoria was buried in the beautiful christening gown that my mother-in-law and sister-in-law had picked out for her. At the gravesite we released a pink balloon. Like the balloon, we were releasing Victoria to heaven. Burying our daughter was the hardest thing Rob and I have ever had to do.

We wish Victoria had been healthy. But while the outcome was not what we would have wished, God did cushion us throughout the entire pregnancy. God gave us the strength we needed to get through this experience. He also gave us very compassionate and caring doctors (Dr. Crawford Long, Dr. George Long, and Dr. Ken Kupke). He gave us warning of our baby's condition so that we would be prepared for her death. God gave us family and friends who were incredibly supportive. I had an easy labor and delivery. And, most importantly, we did not have to watch our baby suffer or die. God took her before she experienced any pain.

Why did this happen? We do not know the answer to this question, but we do know it was part of God's plan. As mere humans we can't always understand God's plan but we have to trust that it is a perfect plan and that he has our good in mind. We do not presume to understand God's entire purpose, but we have seen several good things that have resulted from this experience. It strengthened our character, marriage and faith. It also brought us closer to our family. We also know that many people were touched by Victoria's short life. We think she will continue to touch lives for many years to come.

Six months later we are still grieving over the loss of our daughter. Time will ease our sorrow. And, God willing, we will have other children (either biological or through adoption), but we will never forget our precious angel, Victoria. Contrary to what the Perinatologist told us, it was not a burden to carry Victoria to term - it was my privilege. We know our little girl is in heaven now and that God and my mother will look after her until we get there.