There are No Words

Posted on Posted in Hydrocephalus, Induction/L&D, Neural Tube Defects, Spina Bifida, Stories

By Holly

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He wasn’t just a statistic or a stereotype that we had read about online. He was our baby and our baby was sick…really sick.

“There are no words.” This was a response I received from one of my childhood friends when I told her about losing Heath. I had received so many other responses such as “I am so sorry for your loss” or “we are praying for you and your family” etc. and while those responses were nice, “there are no words” was exactly the response I needed at the time. You see, there are no words when someone loses a baby. There are no words when you receive the life-changing ultrasound results. There are no words when you are faced with a decision to terminate. And there are no words when you finally meet your little one and have to place him in the hands of the Lord. “There are no words,” she said, “There are no words.”

On March 15, 2016, my husband, 18-month-old daughter and I went to meet our new baby (via ultrasound). Everything went well and we even got the perfect profile picture you always see in the photo frames. We elected not to find out the gender. We gazed at the screen watching our little one. Once the ultrasound was finished, we headed into a different room to speak with our doctor, which is protocol. We waited…and waited…and waited. Twenty-five minutes later, she arrived.

“I wish I had better news,” she said as she held back tears. She proceeded to tell us that our baby, our perfect profile picture baby, had signs of spina bifida. The tech noticed a gap in the lower back and clubbed feet, both of which indicated spina bifida.“You have an appointment at U of M on Thursday to find out more.”

I stared at her and asked for clarification. I didn’t know what spina bifida was or what that meant for our baby, for our family. I just thought that the baby may not be able to walk. She couldn’t provide much insight. “Will I need to abort? “ I asked.

“That is one of the options,” she said.

The night before my ultrasound I had a dream where I went to the doctor’s office, spoke with my actual doctor and she told me that I would need to abort. I was freaked out. I was dreading this ultrasound. I went crazy in my dream (emotionally), crying, screaming, and asking for other options. And now, here I was wondering “will I have to abort?”

We traveled to U of M and received a level 2 ultrasound where the diagnosis was confirmed: myelomeningocele, L2, hydrocephalus, chiari malformation and clubbed feet. That was a lot of medical terms thrown at us in one sitting. Our MFM sat us down and explained all those things. She told us our options, explained the next steps, conducted an amniocentesis and set up two days of meetings with her team so we could gather more information.

That following week we met with the MFM, the neurosurgeon, the anesthesiologist, the neonatologist, and a social worker. We had an MRI and were given a tour of the NICU.

During the two weeks in between our trips to U of M, my husband and I had decided that if we qualified for the in-utero surgery that is the option we would take. Yes, it would be difficult but the research behind this surgery had so many positive effects for our baby that we would sacrifice our lives to better his. Our struggle would be for a short time in order to have a lifetime of improvements for the baby. Yes, in-utero surgery was our choice.

But something happened during those two days of meetings. We learned about our baby. He wasn’t just a statistic or a stereotype that we had read about online. He was our baby and our baby was sick…really sick. As we gathered more information we continued to push aside the realization that we may be choosing option three, termination, but hope still crept in and kept us focused on the surgery.

The baby and I were both candidates for the surgery. We were left with the tough part, making a decision. Our MFM, was amazing. She walked us through the pros and cons, the before, during and after, and the present and future implications for all options (in utero surgery, post birth surgery and termination). She told us that there is no right or wrong answer. There is only the answer that is best for your family. That was comforting. During this whole process, we never felt pressure to lean one way or another. While we were hoping we would have a clear answer to what was right, we learned that we would have to make the decision on our own. After many tears, long conversations, thoughts about my little 18-month-old at home, concerns about my baby and dreams about our future family, we decided termination was the right decision.

We told the MFM and scheduled for the following week.

Our baby’s heart was stopped via KCL injection on Wednesday, April 6, 2016. It was horrible. After the first round of numbing shots in my abdomen, I had a panic attack. They had to drape a cold cloth over my head, turn me on my side and stop the procedure. I prayed for strength and they started with the numbing shots again. It felt like it took forever. I kept thinking why is this taking so long? I am not supposed to be doing this. The baby doesn’t want this. The baby is not cooperating because it is a sign that we shouldn’t be doing this.

Finally, it was over. I cried and cried with my husband. That was it, our baby was dead and we were responsible for that outcome.

I was sent to Labor and Delivery and at 4:30 am the next day, I delivered my baby vaginally. It was a baby boy. We finally had our baby boy. Heath Daniel was beautiful and lay there so peacefully in my arms. My husband and I wept while we held him, kissed him, and said our hellos and our goodbyes.

The hospital made us a memory box, took photos, and had handprints and footprints made. We had the chaplain baptize Heath that morning before sending him to the Lord. The photos we have of Heath help us tell our daughter about him and remind us of the day we met our little boy.

I tell people that Heath had significant medical complications and that we lost the baby in April. I tell myself that the decision we made was the best decision for our family. I tell my closest friends and family that one never knows what his/her decision will be regarding termination until one actually has to make that decision. But ultimately, when it comes to ending a wanted pregnancy the only thing to say is “there are no words.”

~East Lansing, Michigan

 

Photo courtesy of Pixabay