Losing Joseph

Diagnosis: Trisomy 21

By Joseph's Mother

It's been three weeks since my husband and I had to drive to the hospital and up to labor and delivery. Last time I was there I was so excited and so happy. My first baby was coming and I couldn't wait. I had such happy memories of this place, now I was walking in there on the worst day of my life. Shortly after we arrived the nurse wheeled the bassinet out of the room. We wouldn't be needing it.

My first pregnancy went fine, I had no problems and had a beautiful baby boy. All three of us were ready to add one more to our little family. The early part of the pregnancy was fine, I was sick just like the first one. When I went for my regular appointments, every thing seemed to be going smoothly.

When it came time to talk about the triple screen the nurse handed me the paperwork along with advice that there wasn't a great need to even take the test as I had no risk factors. So I put it out of my mind until the next time I came in for an appointment. This time the doctor asked me about the triple screen, "did you want to take the test?" I was pretty confident, like everybody said, I had no risk factors. She probed me again, "would it change you decision about the pregnancy if you knew?" I thought for a minute about it, and suddenly realized that yes it might change my decision. So the next week, as scheduled I had my blood drawn. I wasn't worried, it would be normal. A week later I got a phone call.

The nurse called and left a message on my machine. I just knew when I heard it, it must be bad news. It must be about the blood test. My husband thought I was overly dramatic, "it might be nothing" he said. The next morning I called bright and early and the nurse was hesitant on the phone told me my numbers were out of range of normal, possibly indicating Down syndrome. My heart sank.

The next morning I went for more tests, ultrasounds and an amnio. During the ultrasound, I was beginning to have some hope, there seemed to be no other signs of trouble. The genetic counselor had told us that babies with Down syndrome often have other soft markers and bowel or heart abnormalities. So far they saw nothing unusual. We were going to wait and not find out the sex of the baby but at that moment both my husband and I decided we did want to know.

It was a boy. A second boy, a baby brother for my older son. I had a feeling it was a boy. Maybe everything would be fine, the numbers were really in my favor. Then the doctor came in to have a closer look at the heart. She told us that she did seen an abnormality there oh no it really was happening. We decided we had to know for sure so we did the amnio. Devastated and exhausted, we went home to wait for 10 long days for the results.

I guess in my heart I knew from the first phone call that something bad was going to happen. But everyone kept assuring me, "try to be positive," "the odds are in your favor," "those screening tests are not reliable." Day by day I just tried to get through, I couldn't think of anything else. I was already 18 weeks pregnant, I was showing, all of our family all of our friends, even our neighbors knew we were expecting another baby.

We were going to have to face everyone and explain we lost this baby. I was simply dreading it. The hardest part was thinking about what I was going to say to my son. He was so excited about the baby, he was anxious to be a big brother. He would be a great one, he is so gentle and soft spoken. Every night he would play peek-a-boo with my belly hoping to make the baby laugh. How was I going to explain this to him?

The tenth day finally arrived. I was trying and trying to call to get my results. I couldn't connect with the genetic counselor. When I finally got home, she had left a message on the machine to call her back. I called her and she picked up. She spoke the words I was dreading to hear "I am sorry, but the test results are positive the baby has Downs syndrome." I knew what the results were going to be and yet I still couldn't really believe it. I was crushed, my heart was broken.

I had to tearfully tell my four year old son that Mommy was crying because the baby was very sick and he wasn't going to come after all.

In my long wait for the test results, I studied all the facts. All the stark facts about Down syndrome and what probably would lie ahead for this little guy. Not just the mental retardation, but a whole host of physical ailments. No one can predict how severe it will be, but knowing the possibilities, I had to face the awful decision that no mother should have to face.

Knowing the facts, my husband and I simply could not choose this life for him. We both knew we had to end the pregnancy. One of my only comforts was being thankful that I already was a mother, a mother to a beautiful, sweet, healthy boy. My heart went out to people who faced this awful decision with their only child, how much worse it must be for them.

The night before I was scheduled to go in to have my labor induced, the baby was moving a lot. I knew this would be the last time, guilt and anguish overwhelmed me. Labor lasted about eight hours and was not particularly painful. The moment came at last and my little son was born. They told us he would probably not be alive, but yet he was alive when he arrived, he was breathing.

My husband and I both saw the same thing when we first laid eyes on him: He had the same little nose as his big brother. We held him for half an hour. I am grateful for that time, I wanted to hold my son, name him Joseph as I had planned. I told him I loved him with all my heart and hoped he understood what I was doing was out of love for him. I told him I was sorry. It was the saddest day of my life.

My husband, who had been trying to comfort me this whole time, finally let his guard down. He crawled into bed with me and sobbed.

The next morning I was released, no longer pregnant and walking out the maternity ward empty-handed. My friends and family were supportive but they really had no idea what it was like for us. The hospital staff was kind and offered us grief information. All the brochures were for parents of stillborn infants. This didn't fit with me, I sometimes wish I had no choice in the matter. I am the one who had to decide to end his life, that is a heavy burden to bear. I know in my heart I did the right thing but it doesn't absolve me from the guilt and doubt I carry around with me every day.

I came to this website in the days immediately following and took great comfort in reading about other parents struggles. I am not alone. I hope this story will help someone else feel that they are not alone.

To my baby boy Joseph, we love you, we miss you, we will remember you always.


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