How many children do you have? For most women, that is such an easy question to answer. But for me and many others who have suffered a loss, the question isn't quite so simple. I always answer that we have four children. Sometimes I just leave it at that but sometimes I elaborate. Kelsea was born November 1997, Nathaniel June 2001, and Adam October 2002, and we have a daughter Sydney Grace who was born September 17, 2000. She was with us for 5 days, 6 hours, and 31 minutes before going to Heaven.

We found out when I was 19 weeks pregnant that there was something wrong with Sydney. I had an ultrasound that day, July 5, 2000, and we were supposed to find out what we were having, a baby boy or a baby girl. However, that was the day our world changed. We were told very little, just that it appeared that our baby had fluid on the head. We weren't even told what that could mean because there were so many possibilities. We had to wait a week to find out any more information because the ultrasound specialist was on vacation. That was the longest week of our lives.

The following week, July 12, 2000, we were given some more information, more information than we cared to know. We were told our daughter (we found out that day we were having another little girl) had a skeletal dysplasia and that she would probably not live. There are many, many different types and most of them cause dwarfism. How could this be? Nothing like this runs in our families. We were in shock.

I was then 20 weeks pregnant: Sydney's head measured 22 weeks, her upper arms and legs measured 15 weeks, and her lower arms and legs 13 weeks. I had more ultrasounds as my pregnancy progressed and each time her head measured large and her limbs small. We were also told that her toes and fingers were webbed, she had a bulge on her forehead, and her chest was extremely small. All of this eventually led to a diagnosis of thanatophoric dysplasia. As soon as those words were spoken, I knew. I had been doing a lot of research and knew that thanatophoric dysplasia was lethal.

We went on with our lives as best anyone could after being given such devastating news. We refused to even consider ending our pregnancy. We prayed every single day that God would grant us a miracle. We knew Sydney's prognosis was very grim...babies with this disease are either stillborn or die just a few hours or days after birth. However, we refused to give up hope, vowing to do everything we could for our daughter, to give her every chance possible.

September 14, 2000, I had noticed a little pink discharge. I called the hospital and the doctor said as long as I wasn't having contractions, I was okay. Fifteen mintues later my water broke. I was only 29 weeks pregnant. We called an ambulance and were taken to the hospital which was 40 minutes away.

When we got there, the doctor did not want to even monitor Sydney's heartbeat! (My OB was out of the country) He said that she was going to die anyway and that if she went into distress, he was not going to try and save her. Can you imagine hearing those words? We were devastated. To make a long story short, we fought and ended up having little Sydney monitored and we told the doctor that he would do everything he could for our daughter. He even confessed that he was treating me differently than he would treat a mother with a normal baby. I was crushed.

I never really did go into labor so I was scheduled for a c-section Sunday, September 17. This was even hard to come by. The doctor did not want to do a c-section even though Sydney was breech. Afterall, remember, she wasn't going to live anyway. Well, once again we fought for what we wanted and did end up getting the c-section. However, it was performed by a different doctor.

Sydney Grace was born September 17, 2000, at 8:35 AM and weighed 2lbs 12oz and was 14 inches long. Honestly, we were amazed by how good she looked. We had been told so many different things and she didn't look anything like we had imagined. I expected her to be so tiny, but she really wasn't, not like I thought a dwarf would be. I did not get to hold her right when she was born because they had to work on her. However, before they wheeled her to the Special Care Nursery, they did roll her over to us for a quick peek. I'll never forget, she looked right at us. The nurse said she was even crying right when she was born but it was too soft for us to hear. We never did hear her cry.

We found out later that day that Sydney did NOT have thanatophoric dysplasia! Instead, she had another skeletal dysplasia called osteogenesis imperfecta, or brittle bone disease. She had many fractures from being in the womb alone, some of which had already healed. I did get to hold Sydney about four hours after she was born. What a precious moment. Later that evening she was flown to UVA hospital. This flled me with much hope because I didn't think they would send her to another hospital unless they could help her. My husband went with her, but since I was recovering from the c-section, I wasn't allowed to go until Tuesday evening.

It was so hard to see my precious little girl on the respirator. I was afraid to even touch her for fear of fracturing a bone. We found out that of the four types of OI, Sydney had type 2, the most serious and lethal. The time with our daughter was going to be too short. We made sure we did everything we could for her. We took lots of pictures (5 rolls), 2 videos, sang to her, read to her, let her see her big sister, and just let her know every moment that she was so loved.

Sydney was flown back to the hospital where she was born Thursday, September 21, because UVA had done everything they could. It was time to go back home. There would be no miraculous recovery. She was going home to die. When we went to visit Sydney the next day, Friday, September 22, it was obvious that she was in pain. We had not noticed this before. So, even though it broke our hearts, we made the heart-wrenching decision to have her taken off the respirator. We called our families and pastor and told them to come quickly so they could tell her good-bye.

We were given a room on the Labor and Delivery floor. They provided a rocking chair and two nurses even volunteered to video and take pictures for us. After they had removed the tubes, they brought our precious Sydney Grace back to us. I'll never forget that moment. It was the first time I had really gotten to see her face. My poor baby. I held her, kissed her, caressed her, sang to her, read to her, and let her know how much her mommy and daddy loved her. She fought so hard. I also made sure her big sister got to see her one last time. After Kelsea left, I kept telling Sydney it was okay to go with the angels and be with Jesus, even though every ounce of my soul wanted her to stay with us. She tried her best to breathe and it broke my heart to see her struggling. At 3:06 PM, about 30 minutes after the respirator was removed, Sydney passed away. We were allowed to stay in the room and spend as much time as we needed with her. We bathed her, dressed her, and basically just held her because we were not really able to do so while she was living. We ended up spending another five hours or so with her, although it was not really her, just her body. The hardest thing I ever had to do was hand my daughter over to the nurse, knowing I would never get to hold her on this Earth again.

The only way we are getting through this is with the knowledge that we will definitely see our daughter again one day. We will be able to hold her and kiss her and not have to worry about hurting her. She will get to meet her two baby brothers who have done so much to heal our hearts and see her big sister again. Our family will finally once again be whole and there will be no more goodbyes.

2007 Update Sydney would be seven years old this year and I still think about her daily. I no longer cry every day and thoughts of her usually bring a smile to my face. However, I do still have hard days, sometimes very hard days. Her birthdays and angel days are always especially hard. She is still very much a part of our lives. Her picture hangs on the wall right next to her brothers' and sisters'. We talk about her often.

Since Sydney died, we have had two sons, suffered a miscarriage, and had a daughter named Grace in honor of her big sister. Our oldest daughter Kelsea remembers Sydney and the short time she spent with her. She is a very compassionate little girl. I have no doubt that is a result of everything she has been through. Our sons, Nathaniel and Adam, talk about Sydney even though they never met her. They have asked a few questions but I know they still don't fully understand what happened. Grace at only a year old is not old enough to talk about Sydney yet. However, she hears us talking about her and she participates in our birthday celebrations and visits to the cemetery. I never want any of my children to point to a picture of Sydney and ask, "Who is that?" I want them to know who she is even though she is no longer here. The kids talk about the day they get to meet Sydney in Heaven, along with our miscarried baby Riley. It is a day we all look forward to so we can all be together for the first time.

Editor's note: Thanks Heather, for sharing your family update. It will be helpful for some of our parents to read about how they can talk about a baby who has passed away with the younger siblings. You've shared some very concrete examples of how to live in both remembrance and hope.