Termination for spina bifida and chiari malformation

My Sweet Cami

Posted on Posted in D&E, Neural Tube Defects, Spina Bifida, Stories

“I decided to make her baby book and have a necklace made with her would-be birthstone and the letter ‘C’ “

By Megan

December 15th was a great day for my husband and I. We heard our daughter’s heartbeat for the first time and my husband was accepted to the police academy all on the same day. Life couldn’t get any better.

Then in February we went in for the 20-week ultrasound. The tech was very cold and barely spoke as she took 70 images of our baby, measuring every inch. We figured this was routine and asked if we could know the gender. She replied, “I’ll see… I can’t guarantee anything,” and without an ounce of enthusiasm, told us we were having a girl. She took a couple more pictures of the spine and then stepped out of the room.

My husband and I left with the exciting news and drove straight to our parents to share our baby’s gender. That next week, we named our precious baby Cameron LeeAnne. I finally allowed myself to shop for baby clothes and make my baby registry. But after a week of being on cloud nine, we were hit with devastating news.

My OB called on a Friday, exactly seven days from when we had the ultrasound. She told me that Cameron had signs of spina bifida and an Arnold-Chiari II malformation that would need to be checked by specialists. In shock, I cancelled the rest of my day and rushed home to tell my husband. It was a holiday weekend, so we weren’t even contacted to make the appointment with the specialists until the following Wednesday.

We took to Google and realized how severe Cameron’s diagnosis might be. With the help of my sister, we were able to be seen by a Stanford doctor. With $2,500 out-of-pocket, they confirmed our nightmare via ultrasound. They asked if I had done the testing that may have told us sooner. I explained that given mine and my husband’s ages and nothing alarming in our families, we had previously opted out of testing.

We finally had our meeting with the board of specialists at UCSF on March 6th at 23 weeks. Insurance kept us from being seen sooner. I considered fetal surgery, but was told that this would only at best be a 30% improvement to Cameron’s condition and that it would mean risking my uterus rupturing.

After receiving a fetal echocardiogram, multiple ultrasounds and meeting with a neurosurgeon, perinatologist, social worker, and spina bifida expert, we knew what our decision had to be. The specialists explained that our sweet girl had a low lesion (S2) which meant she would be likely to walk unassisted but would eventually end up needing a wheelchair. She would need immediate surgery to repair her spine and a shunt placed in her brain to drain the cerebral fluid, and this procedure could cause scarring and effect her frontal lobe. Shunts would malfunction and would need to be replaced throughout her life. She would need multiple brain surgeries. She would also need to be cathed every two to three hours to prevent infection and be placed on a bowel regimen.

How could I ask for a baby to endure this kind of torture for the rest of her life? We decided that day that I needed to have a D&E. I was scheduled to go back a few days later to have my procedure and surgery. My husband could not be there due to his commitments to the police academy—he would have been dropped from the program and we would have lost our insurance. My sister was there as I felt my baby move for the last time. It was the most devastating day of my life, knowing Cameron wouldn’t be coming home with me.

After the D&E, to add insult to injury, my milk started to come in. I had gone back to work as a hairstylist and was bombarded by cruel questions. “You work too much, is this why this happened?” “Could it have been all of the chemicals you inhaled in the salon?” “You had a choice?”

In the following week, I decided to make her baby book and have a necklace made with her would-be birthstone and the letter “C.” We had plans to have her cremated and I was starting to cope with our new reality. Then we officially hit rock bottom.

Exactly one week after my surgery my husband was dropped from the academy. All of our sacrifice for nothing. We are childless and my hardworking, strong husband is now jobless. What have we done to deserve this? We will rebuild, we will get through this and I’m becoming a stronger person. I’m still here, despite tragedy and I refuse to give up. We will have more children one day and my husband will achieve his plans to become a police officer, just on a different schedule then we had planned.

 

CC0 Public Domain image courtesy of StockSnap via Pixabay