We just had our appointments with the Pediatrician and Neurosurgeon at Riley yesterday, March 11, 2011. We had been looking forward to meeting these doctors because they are so crucial to the health and development of our son. The Neurosurgeon will perform the surgery to close the spinal lesion the same day that Bennett is born. The Developmental Pediatrian will track Bennett's progress and make sure that he is seen by all the appropriate doctors through his childhood years. Bennett will also see the general Pediatrican that Matthew visits for all his vaccinations and measurements.
Our first appointment at Riley was with Lori Lowe, the Nurse Practitioner who coordinates for the Developmental Pediatrician. We met in a room where we will be visiting for clinic days after he is born, every three months for at least the first year. She explained that we should expect a long day for clinic where many doctors come to our room to evaluate Bennett and do any necessary testing. She gave us a packet of information and a book about Spina Bifida. She answered our many questions and gave us an overview of what to expect from children with Spina Bifida. Lastly, we took a tour of the NICU at Riley. It was on the third floor and there were a number of different rooms. We were able to peek in a window to see the incubators lined up against the wall in one of the modules. I am a little worried about how comfortable our NICU visits will be because it looked rather busy and cramped in the rooms. I do feel like Bennett will be in good hands with all the expertise of Riley's Spina Bifida Clinic and all of the Riley doctors. I'm also glad that we have had a little NICU experience under our belts. Matthew visited the NICU right after birth and was monitored for a few days due to aspiration of meconium. We know the general rules and what it feels like to have to go visit baby.
We met with the Neurosurgeon, Dr. Laurie Ackerman, next. She talked to us about how the surgery will go. She also explained possible complications that come with spina bifida in order to prepare us for all possibilities. Some of the possible issues include swallowing problems and sleep apnea, which could be caused by the arnold chiari malformation. Also, the kidneys and bladder will need to be monitored closely because there is usually damage to the nerves in that area. The neurosurgeon also told us that the plan is to have the back closure surgery the afternoon after Bennett is born. She explained that the surgery will be to pull the muscles together and then skin on top of that. She could not give us a timeframe of how long surgery lasts because sometimes they need a plastic surgeon to assist if there is not enough skin to cover the lesion. She confirmed that I will deliver downtown at IU, right next door to Riley. She told us to be prepared for shunt surgery because 90% of children with this form of spina bifida (myelomeningocele) need the shunt, and Bennett already has hydrocephalus. It's possible that the spinal fluid will level off, but not probable. She said that once the back is closed, the fluid usually starts to build up. They will try to hold off on doing the surgery as long as possible if it is needed, usually a couple days before he is released from the hospital. The average stay for spina bifida is 10-14 days.
Before we left Riley Hospital, the neurosurgeon set us up with a consultation appointment with a Urologist. She told us that this would be another important department that we will need to get acquainted with. Almost all children with Spina Bifida have bladder and kidney issues. The nerves in the sacral area of the spine control bladder and kidney function. As soon as we heard this news Andrew remembered that Dr. Rink, a friend of the Neal family, is a Pediatric Urologist at Riley. We asked if we could be referred to him, and luckily we were able to get the appointment set up right away! It is great to know someone who will be working with our son and have a personal connection with our family.
During our meetings, Andrew and I were finally able to ask all of our questions about spina bifida, and it really helped for us to get some information from a knowledgeable source. Overall, I think that the visit to Riley helped us to feel more comfortable with the diagnosis and more prepared for our hospital stay.