Vanessa Lane

This is the story of our precious angel, Vanessa Lane. She was born on Wednesday, October 2, 2002 at 8:36 p.m. She was 7 lbs and 5 oz and 20 inches. When she came out, they laid her on my chest and told us that she was probably taking her last breaths and that we should say goodbye. But she didn’t go. She stayed with us for 6 days.

She was born with birth defects to her skull and brain (Acrania and open encephalocele), and defects to her fingers on both hands and one of her feet caused by ABS(amniotic band syndrome). There was a part of her skull that had not formed and she had an opening at the crown of her head (encephalocele) She must have had a band around her neck at some point before the neural tube was able to finish fusing. This band also caused her to have choanal atresia (she couldn’t breath through her nose very well) she was also missing one eye with that lid fused shut. The doctors said that due to the condition of her head that infection was imminent. They told us that there was nothing that could be done and to take her home and keep her comfortable. They suspected that she would probably only live for a day or two. But our little girl was such a fighter. She was so strong. She acted like any other newborn. She nursed and everything.

We had Hospice helping us. They helped a lot,with support and coming out everyday to check on us. We never put Vanessa 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. And when she was awake and she looked up at you, you felt so honored, you felt blessed.

Her head had to be kept covered by sterile pads and Mike and I did most of the dressing changes because it had to be done quite frequently. Hospice kept us supplied with all the dressings and sterile gloves. In the beginning,Vanessa would cry when it was done but then after the second day she didn’t cry, she just fidgeted 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 baby’s face was horrible. We had to start giving her anti-seizure medicine and a sedative 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 just couldn’t do it. So, for a day and a half she ate nothing. Everyone said that sometimes that is the choice you have to make. If it’s between feeding her or giving her the medication to keep away the seizures, then you should choose the medication. But it was so hard. As a mother,it was hard to accept that not feeding my baby was what would be best for her.

On her 6th day, her last day with us, she was awake. More awake and alert than she had ever been. Even with all the medication. She was looking around for most of the day. And she didn’t have any seizures at all that day. She even took an ounce and a half of milk by medicine dropper. Everyone was so surprised. But by this time we all already knew that she was calling all the shots. And everyone stopped trying to predict what she would or wouldn’t do. She was proving everyone 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. It was just Mike, me, and Vanessa. We talked to her for quite a while and 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 where she was going she wouldn’t be in any more pain. That she would be an angel. A little while later her breathing changed even more and she appeared to be sleeping. It was 9:30 p.m. and time for her medication. Usually,even if she was asleep or sedated and we tried to give her the medication,she would react 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 went. She passed in our arms.

Hospice arrived and pronounced her. Our family came to say goodbye. Mike and I bathed her and dressed her in a beautiful white dress. She had lost weight and the dress was a little big but like the chaplain from hospice, said “that’s OK because she needs room for her wings.”After she was dressed the funeral home was called. Then a man in a suit came and took my baby away. I’ve never in my life 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 really 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. I miss her so much. I miss my baby and I want to hold her and kiss her cheek and smell her breath. She’s our precious little angel.

Thank you for letting me share her story.

Barbara Johnson

One thought on “Vanessa Lane


  1. That was beautiful actually made me cry you wrote in a way that made me feel like I was there made me feel just a sliver of your pain id say sorry for your loss but I dont believe you are I dont think you would of traded those 6 days away for anything despite the pain it caused you 🙁 puts my amniotic band syndrome situation to shame I just learned about all this from my girlfriends podiatrist but it only made 4 of the toes on my left foot look like little pinky toes he told me to consider myself one of the lucky ones and told me the name of the condition and so here I am readinf up on what would of been way more serious thanks for the new perspective on the situation where id always fear going to the beach and get anxiety having to tell girls ive dated

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