Everyone Needs a Little Help

Diagnosis: Duodenal artesia, HLHS and T-21

By Anonymous

Everyone needs a little help. That is what I remember the doctor in Wichita, Kansas telling me.

The end of August, beginning of September 2004, my husband and I got the news that we were expecting our second, due to arrive April 30, 2005. All was going well throughout the pregnancy. My husband had found out the sex but at the urging of a friend I had chosen not to find out. I wanted a surprise in the delivery room.

We were excited to be having our second child, a sibling for our three-year-old. Although we were content with one child, two would complete our family. We painted the baby’'s room, put in new carpeting and got all the baby stuff from the attic to wash and clean.

On March 24th, 2005, the Thursday before Easter, I went to the OB/GYN for my regular appointment. I knew an ultrasound would be done, I had asked my mom to come to the appointment with my daughter and me. During the ultrasound, the midwife noted a second fluid sac in the baby’s lower abdomen. She was unsure of what it was. Noting the concern on my face, she recommended I go for a second level ultrasound.

The next Wednesday I went back to the midwife after work, hoping another ultrasound would be done and that the second fluid sac would be gone. The midwife listened to the baby’'s heart. It sounded strong, but she noticed a skipped beat. She said it sounded like a little arrhythmia and that can be common in the last trimester. She did an NST and ultrasound. The second fluid sac was still present in the lower abdomen; the heart arrhythmia could be heard on the NST but not clearly seen on the ultrasound in the office. Knowing I was going for the second level ultrasound the next day, the midwife said she would call and have them look at the heart to see if everything was okay.

The next day at the level-two sonogram they noted that I was at 34 weeks 5 day, measured everything and said all appeared to look good. They really focused on the heart, enlarging the image on the screen, explaining as they scanned each picture and diced through it. However, they didn’t really say very much about what they saw.

Next, they moved to the lower abdomen area. The second fluid sac was very evident on the screen. I could feel the uneasiness in the room. Our world fell out from under us as “Down syndrome” came out of the technician’s mouth. I felt the wind knocked out of me and began sobbing into my husband. He stood there trying to be so strong, absorbing it all and trying to make sense of it.

The technician left us to give us some time to digest the news, then returned with the doctor. The doctor scanned and rescanned, explaining the findings to us. The lower abdomen appeared to have duodenal artesia (or double bubble) and the heart had an endocardial cushion defect (hole between the right side and the left side). Trying to give us some hope, he said both were operable after the baby was born, but there were no guarantees. However, the findings lead to a possibility of a chromosome abnormality, and he recommended an amnio. Wanting to have the cards laid out before us, we agreed to return the next day to have the amnio. That night, we shut and locked the door to the completed nursery.

We returned for the amnio Friday morning. The doctor we’'d had the night before met with us again. He explained that the sonogram was reviewed that morning by pediatric cardiologists, experts in this field. Their assessment of the heart defect went from bad to worse: they diagnosed hypoplastic left ventricle (underdevelopment of the left side of the heart) repairable only with a complete heart transplant and/or three open heart surgical procedures. We went ahead with the amnio, but knew in our hearts it was going to come back positive for Down syndrome.

We met and discussed all of the options from surgery, adoption, to comfort care to termination. However, because I was 34 weeks and 5 days pregnant, no termination could be done within our state. There was the possibility of being referred to Kansas.

The doctors said if the amnio revealed Down syndrome, the likelihood of surviving surgery would be minimal to none, and without surgery the baby had 100% chance of fatality. However, not one doctor would promise us that if we opted not to have surgery and let nature take its course, that our wishes would be abided by. This was disturbing to us. Nor did they tell us that Down syndrome babies don’t get heart transplants. If the doctors felt they could give the baby a quality of life, they would take matters into their hands even without our consent.

Following the amnio, we met with our regular OB/GYN and discussed our options. Adoption: How could we do that and always wonder “did our child make it? Was our child well-cared for?” Surgery: Facing a heart transplant or three-open heart surgeries with a transplant down the road. Yet with a child with Down syndrome, how would this be a quality of life? Life is hard enough for them. We considered the effects on our family and our three- year-old. Comfort care: We could not get a straight answer that our wishes would be abided by. Termination: How could we, this far along? But this option was the only choice in which we would have a say.

After our meeting with our regular OB/GYN, he contacted a doctor in Kansas who would agree to termination based on the baby’s fatal condition. That Friday afternoon, we made the hardest decision of our lives as individuals and as a married couple. We would leave on Monday to start our termination on Tuesday. We cried all weekend, overwhelmed by a flood of emotions. Monday morning our OB/GYN called to tell us the first part of our amnio came back positive for trisomy 21: Down syndrome.

Scared, we drove into the fenced-in center where we were greeted by a smiling, friendly security guard. He informed us that everyday the protesters are there and said to just ignore them. A warm man, he explained he had to search our belongings. We went through a metal detector and he unlocked the door for us to proceed inside. We signed in and were led through another secured door to a waiting room/reception area.

With clip board in hand, a center worker sat us down and explained the paperwork to be completed and that we would be in our own program with five other couples in need of help. One by one the other couples came in, strangers with whom we would gradually develop a bond, drawing strength from one another. There was an awkward silence across the room. We watch an introduction video had some group discussion with the doctor and his associate. They explained the reason they do what they do: everybody needs a little help.

The procedure was explained and gotten underway that morning. I knew in my head I was doing the right thing, but still my heart did not understand.

The process would be a light, twilight anesthesia for the patient; an injection into the baby to slow the heart until it stopped so that the baby would not feel any pain; the insertion of laminaria to open the cervix over the next few days; and then finally, delivery of the baby. Delivery would depend on your body, as labor and delivery are simply not something you rush. For me, being at 36 weeks when I got to the center and farthest along of everyone in our group, the insertion of the laminaria Tuesday morning sent me into contractions by Wednesday morning.

When I returned on Wednesday and was examined, I was already starting to dilate and the doctor told my husband today would be the day. It was almost a relief to know I would not have to wait until the end of the week and my grieving road to recovery could begin.

The following delivery decisions needed to be made: Did we want to view the baby or hold him or her? Did we want photos, footprints and handprints? Did we want our child’'s receiving blanket? Baptism? Cremation? Funeral? Did we want to name the baby? We discussed each question and how we felt about each decision we were making. In the end, these are the decisions that we must live with, the choices we are making and the choices for our baby.

At 2:10 p.m. April 6, 2005 our son, Joseph, came and went in an instant, taking with him a lifetime of hopes and dreams we had for him. He was born silently and not suffering from his broken heart and abdomen with complications of Down syndrome. We can only describe our feelings as being peaceful, knowing that love was all our baby ever knew.

Our hearts ache with sadness and no words can describe how much we miss him and how deeply we love him. He will always be close to our hearts, mind, body and soul. And if it was not for the Kansas doctor, giving us a little help, we are not sure what we would be writing Death and life are the same mysteries.


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