The News

My name is Rebecca. My fiance is Brian. This is our story about Brent.

August 30, 2011 we found out we were pregnant and September 7th we had our first ultrasound. Due to an insurance quirk, we had to go to an outside prenatal specialist for future ultrasounds-a move that proved invaluable.  A routine blood test in October showed a high number of alpha feta proteins and an additional test confirmed the number was increasing. 

We an ultrasound on November 7th and the doctor noticed something was wrong with the baby.  The baby's head was "lemon shaped" and the doctor could not see the entire cerebellum. It was at that point when his tone of voice changed and he believed the baby likely had a spinal cord defect.  He wanted me to undergo an amneotheisis but we were so upset I couldn't bear the thought of a needle being injected into the fetus.  We were referred to The Children's Hospital In Philadelphia (CHOP) for further testing.

We got home and I sent Brian to work. There was no sense in both of us staying home and crying all day. He needed the distraction. I called my mom and she left work to stay with me. Almost immediately, a nurse from CHOP called to set up the 2 days of testing and counseling. The nurse said I would need the amneotheisis before I came-which was the next Monday. I called my doctor and went back for the amneo.

Just before Thanksgiving we made our way to CHOP. I had a 2 1/2 hour ultrasound, followed by bloodwork, fetal echocardiogram and an hour long fetal MRI. Before we left, we met with several doctors who confirmed the inevitable-our baby had Spina Bifida. It was that same day we found out we were having a boy. 

The doctors explained that we qualified for surgery to correct the defect. I was healthy, the baby's defect was in the L4 region and he also had hindbrain herniation. The herniation caused the cerebellum to shift and form into a banana shape, as opposed to a round shape. We had all the qualifications but were also left with the choice. Have an abortion, have the surgery now or wait for the baby to be born and have the surgery. Abortion was not an option so we needed to decide when to have the surgery. Having the surgery now (at 20 1/2 weeks) would give the baby time to heal and a better chance to prevent further injury. It would be a huge risk to both me and the baby and would not "cure" him of the disease or likely prevent any future issues. 

How could we not do the surgery? Wouldn't it be selfish it we waited? Wasn't there a chance that by having the surgery we could prevent him from further injury and perhaps future issues? We were told that whether we had the surgery now or later he would likely have the same issues in the future: lower IQ, possible shunting of the brain, ankle weakness, bladder and bowel issues, sexual disfunction among other things. At 20 1/2 weeks, I would be getting the surgery 3-4 weeks earlier than most. We saw it as 3-4 weeks of healing and prevention. There was no decision. We had to do whatever it took to help our son and give him every opportunity we could to live a normal life.