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Sarah, baby with anencephaly

I was 19 weeks pregnant with my third child. Because I had a daughter with hypoplastic left heart syndrome before, Danielle, the docs thought it would be a good idea to have a level 3 ultrasound done and a fetal heart check. My sister watched my son Kris while my husband Dan was at work, my auntie and I went to the city to get this done.
We were on our way laughing and asking each other what we think it is; a boy or a girl. We stopped by some stores on the way looking at clothes checking things out. 6 hours in a car is a long time if you don't take those few breaks.

Finally we made it to the hospital. I felt butterflies all over me for I was so nervous. They took us into the room where I laid on the table and did the fetal echo to check the baby's heart. The doc kept looking at the baby and looked around not saying a word. She was leaving the room and came back. Then they got the heart doc whom I have been working with because of my daughter Danielle's heart condition. He came in and looked around then asked if I was having a ultrasound. They showed me and auntie where to go. We walked over to the waiting room still not knowing if the baby was ok or not. After a few minutes they called us into a room. They told my auntie to wait in the chair next to the room until they were done. They would come and get her so she could see the baby and the sex of the baby.

So there I was, in this room, scared and not knowing anything. Two techs in the room were looking at the ultrasound. I kept asking if I could see the screen and they kept saying: "In a minute, we're just looking right now". After what seemed like forever, they left the room and got another doc. She did some more pics and then told me to wait outside in the chair for a minute, she would come get me. So I went.

My auntie and I thought this was a little weird but waited. Danielle was so peacefully sleeping in the chair. They called me back in the room and told auntie to wait a minute. As I walked into the room, I didn't understand why auntie couldn't come in. They told me to sit in this chair. The doc began to tell me that I was carrying a very sick baby, my daughter had anencephaly. I looked up with my eyes full of tears and asked: "Is she going to die?"

The doc told me: "Yes, she will." The doc said I could abort the next day or when ever I wanted. I fell to my knees in tears telling them to get my auntie in the room now. As she came in the door, I looked at her it was as she knew this was not good. Her soft kind and gentle hand wrapped around me and she said we will get through this. The doc began to tell auntie how sick the baby was. I began to feel so sick. I needed to get out of there and get some air. We got Danielle and went to the car.

I just sat there a moment, thinking: "Why us? Why us again?" Tears rolled down my checks. I was thinking: "This poor little baby girl is going to die." I didn't know if she would die during my pregnancy, during birth or after birth. Should I abort or should I let the Lord do his plan? I never believed in abortions but now I found myself asking if it was fair to her. Or should I stay with what I believe?

All those questions!

It was the longest ride home ever. A lot of tears and really not knowing what to say. My auntie and I had a lot of questions. But my auntie made one thing clear: she would be there for me through it all.

After 6 hours of driving I was finally home. Now how should I tell it daddy? Happy to see me, he wrapped his arms around me. If only he knew... It was late, so he went off to bed for the night. I tried to sleep a little but couldn't. All I could think about was this little girl in me. How she was moving, kicking and living in me. Could this all be a dream?

Dan went off to work and I did what needed to be done. Taking the kids to school, cleaning the house. The neighbour and I could only hug and cry.

I tried not to cry too much around the kids. Danielle was so little, I didn't want her to know until after I talked to dad. But I am only human and through out the day I would hold my belly and cry. Knowing that in a few hours daddy would be home and I would have to tell him. So when Dan came home, we went and sat on the couch. I began to tell him about what happened in the city. He wrapped his hands around me and asked if I was okay. I looked at him and said no. I didn't think I could cry or hurt so bad. I looked at him and asked him what he wanted me to do. He said something about abortion and then said he would support me in anyway. Whatever I wanted to do.

Sarah, baby with anencephaly

We went back and forth for a few days, because I had this thing in my head that I couldn't get out about abortion. But where do I draw a line with it? I told Dan: "How can I abort when I feel her moving and kicking?" He talked to people and I talked to people and it came down that I had to follow my heart even if no one else could understand why. God gave her to me for a reason and I needed to see her. This one time in my life I really had to do what I wanted.

My baby shower turned into a family get together where I let everyone know I was going to go through with the pregnancy. I told family and friend what I wanted to get out of this.
Some family didn't understand how I could go through this, and some held me and said they would be there.

As the days went on, it got easier. The more she moved the more it kinda felt like a dream. It was like part of me forgot that soon she will be gone to be with our Lord.

My Auntie and I got on internet and got a lot of info, so I would be really ready.

I had an OB/GYN appointment two days after coming back from city. My Auntie and I went in for my appointment and the doc asked what happened. As I was telling him he looked at my file and said: "yes I see it now". He told me that I could get an abortion anytime due to my baby girl having anencephaly. He didn't check for heartbeat or anything; he just told me to think about it because he had never delivered a baby with anencephaly before. All his other patients in the same case had terminated. So I walked out of his office with my appointment for one month later.

I was shocked over what we just heard. We just could not believe it.

I went home and went on with life, doing my research online.

When it was time again for another appointment, I found a really good doc in whom I really trusted. He asked what I wanted to do and I told him: "To keep the baby as long as the Lord lets me". So from that point on, he acted like we were as normal as possible.

We did ultrasound at another office and got treated really bad at all of them done in our town. No one would give us pics, because they said: "If you have a child with disabilities, you can't get a pic". Why can't people understand that?

We tried to get her to be an organ donor and ran into a brick wall with it. No one could even use her in a special way for us. We as parents to a heart child know what it is like to want a heart for a baby, and here we were, willing to give our baby meaning for someone else's little baby and they said know!

Danielle's cardo could not believe that we were turned down. He said we were a great family and were willing to help how special can that be. From that point on, Danielle's cardo and I got really close like we finally see eye to eye. He cut through some red tape and got me a pic of her from an ultrasound I had had down there.

The day of our daughter's birth had come, February 14, 2005. We got to the hospital at 7 am to get ready to have this special child. Family and friend came to be with us and meet her. As we all held hand around my bed we asked God to keep his hands on us and the doc doing the c-section. We asked him to please let us say hi to Sarah before he took her with him. Then we went off to see our girl.

Sarah, baby with anencephaly

At 10:10 a.m., Sarah was born. We looked over at the table and there she was, alive and breathing. She was so beautiful laying on that table. They wrapped her up and gave her to Dan and I to hold and love her. Tears of joy ran down both our faces as we enjoyed her.

Eyes of joy filled the room as we took turns holding this miracle. Taking pics, filming her on tape and holding as much as possible.

The next two days were filled with people that came to see her. The doc asked if interns could see her, everybody wanted to learn something. I said yes because I wanted people to know that she was a baby and that she was alive. But as Sarah's mom, knowing that we would only have little time with her, I also wanted time for just my husband and I to be with her. But we had to wait until we got home for that.

Thursday morning came, and we took our Sarah home with us. She was eating and doing well. We walked into our home around 12. Dan wanted to go back to work. So by 1:30 p.m., he was off to work.

My uncle brought the kids home to me, so we finally could all be with Sarah. Danielle was scared of Sarah at first, but as time went on, she loved little Sarah very much; singing to her and holding her. Kris, my older child, held her as much as he could.

Things were going really good for us. We let the kids stay home for the week, so they could be with her too.

Friday, Sarah started to make crying noises. Her body started to seized up on us and she would cry as she came out of them. I really thought she was going to leave us on this day. I called everyone, and as we all watched her all night, she would have these seizures, but do fine otherwise. This went on for a week. She did not drink her bottle anymore, and I had to find other ways to feed her. You could see that she was getting weaker, but I did not really want to believe it.

Then the day came. I will never forget her last day with us. It was a week after the day the seizures started, on February 25, 2005. That morning, the local paper called and wanted to come out. At 12, they came by to do a story on us and our children. I took lots of pics with Sarah and her stuffed animals and lots of just her. After they left, daddy went off to work and kids went out to play with friends for a while.

Sarah, baby with anencephaly

At around 5 p.m., daddy came home and went to wash up before he gave Sarah and me our hug and kiss, as he did everyday. Sarah started to seize up, so I held her in my arms and told her everything would be ok. Just hang on there and it will be over. It really hurt me to hear her crying. She was not coming out this time, they just kept coming and she would cry. I yelled for Dan to come because I thought she was really passing this time. He came and kneed next to us. He held Sarah's little hand and kissed her forehead. As he was holding her hand, he began to tell her: "It's ok; you can go to be with the Lord now. Be free. Daddy gives you his permission to go." Sarah looked at him as if she knew and heard him. Then she looked at me and I said: "yes baby girl, you may go now." She took one last look at her daddy and me then took her last breath.

My son saw and took Danielle back outside to wait for uncle to come get them. Dan called family and friends to let them know she just went to be with the Lord.
They all came as fast as they could and we took turns holding her and saying good bye. I could not let go of her, all I wanted was to hold her and tell how much she is loved. She passed at 5:33pm and I had to say good-bye at 12 when the people came and took her from my arms. That was by far the hardest thing I had to do, to give her to them...

Sarah has taught me a lot about Love and how to trust yourself. We all learned something from this. She showed us that God has reasons for all things. Danielle is here because the Lord has more on earth for her to do. Sarah had 12 days and her job on earth was done. We have a greater love for life and for each other. We learned we can love someone no matter what they look like or how long we have them.

I hope the kids learned that you don't give up because a doc want you to or because the baby is not perfect. That one minute with her would still be worth it all.

I am really glad I have my auntie beside me as well as family and friends and most of all my husband. My ob-gyn who never gave up on me and let me have memories that I can cherish for life. We all have our angels in life and I can say, many of them walk at our side everyday. Let them know you love them and smile.

Thank you all for your support.

Sarah, I will never stop loving you or stop thinking of you. We all LOVE YOU DEARLY. Thank you for coming to my life. As I should say Our life.



Sandy and Dan had a healthy son in March 2006



Last updated May 2, 2019