Mom, Dylan, and Mara

My husband and I were very happy when I was pregnant again. A brother or sister for our baby boy! We went for a blood test and an ultrasound, because I am not the youngest mom you can imagine. We had already decided that if the baby would have Down's syndrome we would welcome it just the same. We didn't know that in The Netherlands the screening is not only for Down's syndrome anymore. Since April 1st 0f 2011 the screening is for trisomy 13 and 18 also. I knew nothing about these two syndromes. But after the test I knew that our baby had a high risk for both of them, 1/17 for trisomy 18! An amniocentesis was advised and I got that done two days later. On the ultrasound there was a little baby having a great time: bouncing and moving around. A few days later the diagnosis turned our world upside down: our dear little baby had trisomy 18. The doctor advised us to terminate the pregnancy, because our baby, that was so full of life on the ultrasound, was incompatible with life. I had always been careful to not get pregnant unplanned when I was younger, because I knew that terminate a pregnancy would likely be a no go area for me. And now I would have to make the decision to quit the life of that innocent little baby that was so full of life inside of me? I cried my eyes out over that idea. I felt I just couldn't do it. This was my baby, our little baby girl who had chosen us to be her parents. How could I just get rid of her as if she meant nothing to me, while she meant the world to me? Luckily I discovered the stories on Prenatal Partners for Life. I learned that trisomy 18 children actually did have chances to live, however small, and mostly not for a long time. I found that doctors could not tell for sure whether the trisomy was full or mosaic. My husband and I decided that our little baby girl was the only one who had the right to decide how long she wanted to live and it was nobody else's business to interfere. We would let her have all the time she needed to live her life. We would try to get to know her as long as possible. We named her Mara.

We had conversations with doctors and they were surprised about our decision. We learned about trisomy 18 by reading everything on the Internet about it. Ultrasounds showed a lively bouncing baby girl with hardly any anomalies every time again. After 16 weeks of pregnancy I felt her movements and after that I felt her all day long and even in the night when I was lying awake with my head full of sorrows about the future. Sometimes because of the special needs she'd have and if I would be able to deal with that. But mostly because of the things doctors said about our baby. Caesarean section was refused, because the baby would not be able to live, so it just wasn't worth it. Our precious baby, not worth it! Come on! As the weeks went by I started to get really scared for the delivery. What if she'd have trouble during the delivery? The doctors just wouldn't do anything, so she'd have to die in a room full of people and high tech equipment in 2013... We went to see another doctor about this. She came up with the same refusals and she showed us that our baby was already slowing down in her growth and that less vital organs were already getting less blood, a process that was mostly the beginning of the end. In spite of all these sad messages little Mara never quit her little kicks and movements. She had surprised us during a 3D echo session with this earlier. It's not common for trisomy 18 children to be so lively, so I was told. Mara was. She was the nicest baby I could ever wish for to be with me. She let me know she was there and that she was OK all the time. I wish I could make the time stop, because she was with me now and I didn't want to lose her.

After almost 30 weeks of pregnancy Mara suddenly grew more quiet on a Friday. I noticed it right away and I got worried. But at the end of a frightful day she was there again and during the weekend that followed Mara was bouncy and lively as always. Monday came and the movements slowed down again. It was no use to go to the hospital, because they wouldn't do anything. Nothing could be done. Monday night was the first night I lay awake without Mara's little kicks to keep me company. Tuesday morning when I was feeding Dylan his breakfast, I felt a thud in my stomach: Mara was still there! My heart made a leap of joy, but after that it was silent again. That afternoon I had to go to the hospital to have my blood pressure checked. I asked the doctor to check Mara's heartbeat. She couldn't find it. An ultrasound was done. Mara's little heart that had been beating so bravely all the time, had stopped. She had left her little body. The next morning I had to be back in the hospital again and the delivery was induced by pills.The same they use to terminate a pregnancy. I felt a tremendous relief that I had not chosen to do this while Mara was alive. Almost 24 hours later Mara was born. She was so small, so thin and fragile, but she was beautiful. You could tell that she had trisomy 18 because of her fingers, her feet, her ears that were set slightly lower and one of her eye sockets was somewhat bigger. But she was my beautiful baby girl, my precious daughter and I loved her with all my heart and will never stop doing so. She could not be bathed because her skin was too tender for that. So the nurses cleaned her very careful and we were advised to put ointment on her skin later on. After we had gotten some time to hold her, the nurses carefully lay her in the little basket we got from the hospital underneath a little blanket we had chosen for her. A few hours later we went home with Mara, to her older brother Dylan and to my parents who had stayed to take care of him. We would have one week with Mara before we had to let her go again. That week went by in a flash. A nurse was taking care of our house, our guests, my husband, Dylan and me. We had all the time to be with Mara, hold her, caress her, put ointment on her skin, let Dylan be with his little sister. Her grandparents and her uncles and aunts and her cousins came over to see her . We even took her with us for our Sunday morning walk. She lay in her cradle when she was not in my arms and at night she was with us in the little basket we got from the hospital. Much too soon it was time for the funeral. In the presence of family and friends we took time to tell her story, read her a poem, sing songs to her. After that we had to let her go. The moment her little pink basket rolled away from me into that darn oven was the saddest and most horrifying moment in my life. But I could not have done it any other way. I have a daughter, I carried her to her term and we spend every minute together that we had. I miss her terribly even though I know we will be together when my time has come to go to the Home she went before me. Dylan is almost two years and he recognizes his little sister on a picture that is standing next to her urn that we have home with us. One of the words he can speak is the name of his little sister, Mara (only he pronounces it as Mama but I am positive that he means Mara, because I am Mem, which is the Frisian word for Mommy)

There is no easy decision to make when you're expecting a child with an adverse diagnosis. But there is one good decision you can make: WAIT until you have found in your heart what is the best for your child and yourself. Then you will make the right decision that will still not be easy, but will give you peace of mind for the rest of your life. We wanted to let our daughter enjoy her life as long as she could and we wanted to get to know her as much as possible. We had no right to interfere in the plan of her life that had been made by God. She will always be a part of our family. We spend every minute of time we had with her and I don't regret any of the decisions we made for Mara. I have a daughter on the other side and will be re-united with her one day.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.