My Kansas Story

Diagnosis: Spina Bifida & Ventriculomegaly

By K.M.

My son was my long awaited journey into motherhood. He was my lifeline the day my brother died and I thought the world was ending. He was the glimmer of hope that was offered to family members that horrible week that we had four family members die. He was my everything and then he was gone.

At the end of September 2005 my husband and I found out that we were expecting a child. We were so excited! Finally we were starting a family. The following week my brother and cousin were killed in a car wreck, then my aunt died from cancer, and my husband's uncle died in his sleep. In the midst of our overwhelming sadness we still had hope because our son was coming.

On December 12, 2006 I had my triple screen drawn. One week later I had my regular appointment with my OB where he informed me that my AFP level came back elevated. The normal level was less than 2.5 mine was 2.54. He assured me that I shouldn't worry. We both felt confident that it would come back a false positive but I was scheduled for a Level II ultrasound for that Thursday. On December 22nd (my daddy's birthday) my husband, mom, and I met with the genetic counselor who informed us of all that the elevated AFP levels could indicate. According to the math we had less than a ½% chance that anything was wrong with the baby. So we got excited about the ultrasound and started debating whether or not to find out the sex.

Thirty minutes later our world crashed around us. The doctor and sonographer began by taking measurements and showing us all the baby's major parts, but they slowed down when they got to the spine. My son had his back up against the placenta and they couldn't get a very good view but what they could see was not good. The baby had spina bifida. There was definitely an opening from L1-L3 but they couldn't tell anymore than that. Then they proceeded to the baby's heart and showed us the echogenic foci that could be indicative of Down syndrome. The only positive was that the baby's brain appeared normal and so far there was no clubbing of the feet.

We met with the genetic counselor who tried to give us all the possible outcomes of the diagnosis and tried to answer all my family's questions while I said quietly crying, completely numb. Unfortunately I have a medical background and knew too much. I was devastated. We decided to have the amnio and then go home and try to process everything.

We decided at that point to continue the pregnancy because we had so many unanswered questions and were unwilling to end the pregnancy when the worst-case scenario appeared to be that the baby wouldn't be able to walk. We scheduled another Level II ultrasound and anxiously awaited our amnio results. We were cautiously excited when the amnio came back negative but unfortunately the worst was still to come.

A couple of days before the next Level II ultrasound I noticed a change in the baby's movement patterns. He began to move for shorter periods of time and not as often. I tried to convince myself that it was because I was stressed by I couldn't shake the feeling of impending doom. I know that may sound dramatic, but it is honestly how it felt. We went to our next doctor appointment and discussed with the doctor what the possible outcomes were for our child. My husband really wanted to know exactly what the outcome would be and found it frustrating that there were no concrete answers.

We discussed the possibility of hydrocephalus and what that could mean for our son. At this point the baby had not shown any signs but my husband had been reading up on how babies with spina bifida often develop this condition. Our doctor reassured us that so far the baby's brain looked fine and that we would monitor for this, but that there was little to be done at this point.

The doctor then began our Level II ultrasound. Little did we know that we were about to be kicked again. This time we found that the baby's lesion was larger than they had originally thought, it now appeared to be from L1-L5. The most horrible part was that the baby had developed ventriculomegaly: fluid on the brain. At this point, it had had yet to affect the size of the baby's head. I laid on the table crying and knowing in my heart at that point my son was not going to make it.

When we got home my husband wanted to discuss termination but I was absolutely against it. I was in complete denial about his condition and his eventual outcomes. I tried really hard to start fights with my husband so that I wouldn't have to face reality. Luckily I have a wonderful husband who basically let me vent while softly continuing to press me to face what was happening.

We returned to the doctor 10 days later at 22 weeks 5 days and found that the baby's brain measurements were the same, which made everything so difficult. His fetal movements had continued to decrease and I was beginning to return to reality. We asked our doctor about options for termination and he explained that unfortunately we had passed the deadline in our state, so our only remaining option was to go to Wichita. My husband and I decided to take the weekend and really focus on each other and the decision that was ahead of us.

We sat down on Friday night and read the book A Time to Decide a Time to Heal. We completely unloaded to one another about how we felt, what were afraid of, and what we thought the future looked like. I confessed that I felt enormous amounts of guilt; he was my son, it was job to protect him, and I was failing miserably. My husband confessed that he was scared to bring a child in the world who may never have an understanding of himself or his place in this world. That weekend broke us and then we came together. We decided that we had to make the toughest decision of our lives and end our pregnancy.

I contacted the doctor's office on Monday and they took my information and made my appointment for the following Monday. They warned me that there would be protestors and that I would have to pass through a metal detector to enter the clinic. The woman on the phone was very nice and almost started crying herself when I broke down.

I was petrified when we left on that Superbowl Sunday. I was so afraid that I would wake up the next day and not recognize myself. I was afraid I would emerge from the clinic broken and unable to be fixed. I thought I would lose my son, my marriage, and myself. I was also angry. I was angry with God that He "let this happen." I was angry with my husband that he couldn't fix it. Mostly I was angry with myself because I hadn't been able to save my son.

That Monday I arrived at the clinic and met with the other people that were there for similar reasons. We watched a video about the procedure and met with the doctor as a group. She answered our questions about what to expect. We then met with the doctor one-on-one. She answered all our questions about the procedure and tried to reassure my husband, mother and mother-in-law that I would be OK. My husband is a bit OCD so I was very impressed with how well she handled him. She really provided care for our entire family. Following that we went into the examination room where they performed a sonogram to judge the baby's gestational age and determine his position. We went back in with the entire group for some more counseling. A little later we were taken back into an examination room where I was given a sedative. The baby was then given a shot to stop his heart and the laminaria were inserted to open my cervix. After a little more counseling we were sent back to the hotel for the evening.

This was a long and stressful day, so I was exhausted. We ate and I fell asleep shortly thereafter. The nurse called about 9:00 p.m. to check on our emotional and physical well-being.

The following morning the protestors were there again but this time with a twist. They had a huge group of kids with them. These middle-to high school-age kids were out there on the street corner hollering at us. These children didn't have the slightest understanding of what we were going through but they were taught they had the right to judge us. It was really quite sad.

The guard checked us in and we met with the group again. This day was much shorter; just a quick ultrasound to determine the baby's positioning and some sedation for a laminaria change. We had a short counseling session and then were released back to the hotel. The third day proceeded much the same except that at the end of the day they determined that I may go into labor overnight so I must stay at the clinic. I was released to get my things and to grab dinner. I arrived back at the clinic at 9:00 p.m. The attendant and the nurse greeted us and showed us to our beds. I was still exhausted so I went to bed pretty quickly, but my husband is a night owl so he stayed up with chatting with the attendant for a while. She was so great about answering his questions and making him more secure.

The next morning they gave me oxytocin to start my labor. A couple of hours later I delivered our son into this world. The drugs made me very amnesic but I do remember having a dream that my father-in-law and brother were looking down on me from heaven with the baby. They reassured me that everything was OK. I think sometimes God gives us those little nudges to help us through the hard days. Later that afternoon when the drugs had worn off we had a viewing of our son. I was unprepared for what I would see because during the two weeks since our final ultrasound the baby had developed severe hydrocephalus. Still I am grateful that we made the decision to have those few precious minutes with our son. I felt reassured that he was in a better place and that we had made the right decision.

It has now been five weeks. There are days when I am absolutely devastated. There are days when I almost feel like me. I hate that my son is gone. I hate that I had to make the decision to end his life. I hate that my womb and my arms are empty. But I am strengthened in the fact that I made my decision by focusing on him and what was best for him. I am eternally grateful to the wonderful people that guided me through this horrible experience with compassion, love, and understanding.


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