Diagnosis

September 23, 2014

We arrive at St. Vincent and check in at the Center for Prenatal Diagnosis office. We're not really that nervous. After all, the research we've looked at showed in most cases parents with babies who had hydrocephalus said that their OB said everything was fine and baby would grow into it. That is what we were expecting. We were not expecting to hear a diagnosis.

We go into the ultrasound room and get all set up and see our precious little baby on the screen again. We see the little mouth with the same big upper lip as our other two kids. And tiny little fingers and toes. The ultrasound tech pays a lot of attention to the arms and legs and feet. Multiple measurements on those areas. We see the baby's head and for the first time really see the shape. It's not round like a 'normal' baby. It's lemon shaped. This is concerning.

The ultrasound tech measures the ventricles and other last minute things before finishing up and calling in our doctor. His name is Dr. Harold Bivins. He looks over the images and asks us if we knew why we were referred to him. I told him that we knew the ventricles in our baby's brain were measuring large and were sent here to see why. Then he said two words that changed our life forever. Our baby has SPINA BIFIDA.

 

 Spina Bifida is an opening in the spine. It happens in the first 6 weeks of pregnancy when the cells are still forming. Dr. Bivins turns and talks to our genetic counselor, Erica. We follow Erica to her office to talk about options. First, she asks us how we are. It's a lot to take in! Then she asks us if we want to terminate the pregnancy. I am crying and cannot really speak but Joshua and I both shake our heads and he says "NO." She says that she has to ask, 50% of babies diagnosed with Spina Bifida are aborted. "Are we sure that we want to keep this baby?" Again we say we do not want to abort our baby. This was a planned pregnancy. We wanted this baby. Who are we to say this baby is not good enough? God makes no mistakes.

 

Erica talks to us for a long time about what the future holds for us and our baby and about what our options are. Surgery is inevitable. The nerves in the baby's spine are exposed to amniotic fluid and are being damaged. This causes paralysis and any number of other issues. So we can do Fetal Surgery, where they do the surgery now while I am between 23-26 weeks pregnant. There are a number of risks and criteria to meet to be qualified for fetal surgery. The other option is to go to term and the baby will have surgery after they're born. Most likely needing a shunt to drain the fluid in the brain and definitely needing assistance to walk, if they can at all. The damage to the nerves is not reversible. We are interested in fetal surgery and ask for more information. They need blood work today and eventually an amniocentesis. We leave the office numb and in shock. How are we going to tell our family? How are we going to deal? What do we do? So many questions. All we know is that everything happens for a reason and God has everything under control. We just have to take this one day at a time.