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In late 2001, we decided that we wanted to start trying to have another child. We already had a son, Michael, born September 13, 1996. We suffered through two heartbreaking miscarriages, one in August of 1997 and the other in April of 1998. On January 22, 2000 we were blessed with our daughter Kaelyn.

We started trying to concieve another child around October of 2001. I became pregnant on or around New Years Eve. We were so happy! Everything seemed to be going smoothly. I had a little morning sickness but not too bad. I heard the baby's heartbeat at 10 weeks and felt first movements at 16 weeks.

When I was 18 weeks pregnant my afp test (alphafetoprotien) came back elevated and I went in for a level II ultrasound. We found out that our baby had some serious problems. We were told that she had multiple malformations including serious malformations of the head. During my pregnancy they couldn't tell us exactly what caused the problems, and it wasn't until after her birth that we finally found out what had caused it. As I reached the end of my pregnancy they told us that she most likely would not survive the delivery and that if she did there would most likely be nothing that could be done to repair what was wrong with her head. But we were hopeful...we were always hopeful.

Vanessa was due September 23, 2002 (my mother's birthday). This amazing little baby that the specialist told us might not even make it to term was now 9 days overdue. On the morning of October 2, 2002 I had my membranes stripped by my midwife (this is something that is sometimes done to get labor going...it isn't the same as rupturing the membranes). I began feeling crampy right away. By 4:00 that afternoon I started to have my first uncomfortable contractions. By 6:00p.m. they were significantly stronger so I called my midwife.

We left for the hospital around 7:30 pm We got to the hospital at 8:00 pm, and I was 5 cm with very strong contractions, but they were following no real pattern. I progressed very quickly and went from 5cm to 10 cm in a matter of minutes. Vanessa Lane Johnston was born on Wednesday, October 2, 2002 at 8:36 pm. She was 7lbs 5oz and 20 inches long. When she entered this world my midwife laid her on my chest and told us that she was probably taking her last breaths and that we should say goodbye. She didn't go. She stayed with us for 6 days.


She was born with Acrania (part of her skull had not formed proplerly) and an open encephalocele (an opening at the crown of her head) caused by Amniotic Band Syndrome (ABS). ABS had also affected her fingers on both hands and one of her feet.


She must have had a band across or around her neck at some point before the neural tube finished fusing. The band restricted the development of her brain and skull. She also had something called Choanal Atresia which is when the 2-layer membrane between the nasal and oral cavities fails to thin and rupture like it is supposed to. This thinning and rupture of the membrane is what allows us to successfully breathe air through our nose and into our lungs. Since the amniotic band restricted this from happening for Vanessa she couldn't breathe through her nose.



The doctors said that due to the encephalocele (opening at the crown of her head) infection was imminent. They told us that there was nothing that could be done and to take her home and keep her comfortable and enjoy her while we could. They told us that she would probably only live for a day or two, but our little girl was such a fighter.

She acted like any other newborn. She nursed and everything which was very special for me to be able to share that closeness with her. During my pregnancy, I had hoped that she would be able to nurse, and at that moment when she actually latched on, I just felt so proud of her. I don't think anyone thought she would be able to do it. It was difficult for her since she could only breathe through her mouth. She would nurse then stop and take a breath. Feedings took a long time, but my baby girl wouldn't stop until she was full. She was so much stronger than anyone had imagined.



We had Hospice helping us. They helped alot, giving us support and coming out everyday to check on us. We never put her down. From the time she was born until the time she passed I got about 6 hours of sleep. I didn't want to miss a moment with her, and I also wanted to be holding her when she went. She loved to be held and we loved to hold her. When she was awake and she looked up at you...you felt honored...you felt blessed.



My husband and I did most of the dressing changes on her head. This had to be done quite frequently, about every 4-5 hours. I can't describe the way it felt to do this. It was the hardest thing I've ever done. In my mind I kept thinking..."I should be giving her a bath...washing her hair...not changing these blood soaked dressings on my precious baby girl's head." It was hard seeing her like that, but we wanted to be the ones doing the dressing changes because we were very gentle and she knew the difference between her mommy and daddy and other people. It was better for her that we did it and not someone else. Hospice kept us supplied with all the dressings and sterile gloves. They were so supportive. At first Vanessa would cry when the dressings were changed, but then after about the second day she didn't cry when we did it, she would just fidget a little.



When she was 4 days old she started having severe seizures. I'll never forget the look on her face when they happened. To see that look on my little newborn baby's face was unbearable. We had to start giving her anti-seizure medicine to keep the seizures away, but the medication put her to sleep completely so she wasn't able to nurse. We tried so hard to feed her with a medicine dropper, but she was just too sedated to do it. For a day and a half she ate nothing. The doctors said that sometimes that is the choice you have to make. If it's between feeding her or giving her the medicine to keep away the seizures then you have to choose the medicine. It was so hard. As a mother, it was hard to accept that not feeding my baby was what would be best for her.



But on her 6th day, her last day with us, she was awake. The night before we had to start giving her an additional sieizure medicine because the first medication wasn't working by itself anymore, and the combination of the two medications didn't have a sedating affect on her. Our little girl was awake and she didn't have any seizures at all that day, but she had lost her ability to nurse. Once again we were amazed by the determination and strong spirit of our baby girl. She was able to drink her milk from a small medicine dropper. She took an ounce and a half of milk. All the Hospice nurses and our pediatrician were so surprised. By this time we all already knew that she was calling all the shots, and the doctors and nurses stopped trying to predict what she would or wouldn't do. She was proving them wrong left and right from the moment of her birth.



On Tuesday October 8 at around 8:00 p.m. she started to breathe differently. She seemed to be drawing in her breaths really hard. She was still awake, but we knew she was close to passing. She was fighting so hard. There were so many times during those six days when doctors or nurses had told us her time to go was near, and then she would hang on despite everyone's predictions. My husband and I decided that it was time for us to talk to her and let her know it was okay to go. We talked to her for quite a while. We told her how much we love her and how beautiful and special she is. We told her that it was OK for her to go and that she shouldn't be afraid... that we would see her again one day. We told her that her body just wasn't working for her, and where she was going she would be free...she would be an angel. A little while later her breathing changed even more. It was 9:30 p.m. and time for her medicine. Usually,even when she was sedated and we tried to give her medicine, she would react atleast a little, but this time she didn't. She was breathing still, but it was like she was in a coma. She was completely unresponsive. We both held her close and told her we loved her. At 10:03 p.m. she stopped breathing. She passed in our arms. We truly feel like we helped her cross over. She didn't go when they all said she would; she didn't go until we told her it was okay.



Hospice arrived and pronounced her. Our family came to say goodbye. My husband and I bathed her and dressed her in a beautiful white dress. She had lost weight from not eating and the dress was a little big, but like the chaplin from hospice said, "That's okay because she needs room for her wings." After she was dressed the funeral home was called, and then a man in a suit came and took my baby away. I've never felt that kind of pain. I didn't think it was possible to hurt that much. I felt lost and empty.



She was so beautiful. She was so strong and such a fighter. Everyone who knew her was touched by her. We miss her so very much and we still can't believe that this has all happened. It just seems so unreal. She was so precious and I feel honored that she chose me to be her mother even if it was for such a short time. In the short time I had with her (9 months of pregnacy and 6 days I held her in my arms) she has affected me and my life more than anyone else ever has or ever will. She has changed the way I see myself, my children, and just life in general. She has touched my heart and my life more than I could ever explain here with words, and the world is definitely a better place for her having been in it to those of us who were lucky enough to know her. I miss her so much and she is in my thoughts always. I miss the life I would have had with her and the woman she would have grown into. I miss my baby and I want to hold her and kiss her cheek and smell her sweet baby breath. She's our precious little angel.

















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