Sunday, March 13, 2011

Riley Hospital Visit

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.

Tuesday, March 1, 2011

Fetal or post-natal surgery, that was the question...

Shortly after our diagnosis, we found research about fetal surgery. At first, we dismissed it because it was still considered experimental and the MOMS study had finished all of the cases that they were accepting. The surgery became a serious decision to be made after the study results were published. The results were released when I was 22 weeks pregnant, so our decision had to be made quickly. This in-utero surgery has to be performed before 25 weeks gestation, is only offered in three locations in the US (Philadelphia being the location we would pursue), and has many risks that come along with the benefits. We were feeling torn because deep down, neither of us felt that this was the right thing for our family, but we wanted to do absolutely everything we could to help Bennett. The surgery would require us to stay in Philadelphia for 3-4 months, and much of that time on bed rest. It would be a good thing to have the same doctors looking after you from surgery to delivery, but we were concerned because we would like the doctors in Indianapolis to know Bennett's case from the beginning. In Philadelphia, a support person is also required to be with you at all times. Andrew was worried about his business and all the practical things like bills, care of our house and dogs, and our insurance that already denied the surgery so we would have to work with them to hopefully get it covered, and I was worried about leaving Matthew behind for any period of time. We were both worried about the stress all of this would put on our family, mainly Matthew. These were all things that we knew we could deal with and in the scheme of things, did not seem so bad to sacrifice for a few months. The real things to consider were the benefits of the fetal surgery versus the safety of Bennett and myself. The one thing that we knew was that Philadelphia will not perform the surgery in-utero if the lesion starts low enough on the spine (lesion starting at S2 or below) because they say the risks outweigh the benefits with a low lesion. The doctors told us that Bennett's lesion was sacral, so we had hope that it would be low enough to have a better prognosis with the post-natal surgery. The concern for me was that we know that Bennett has arnold chiari malformation and hydrocephalus, both commonly found with spina bifida. This made me very interested in the surgery if it could stop any more buildup of fluid in his brain. Also, I have read about many instances where the lesion location was not accurately portrayed by the ultrasound, so we would be very upset if we found eventually that his lesion was higher on the spine than expected. The benefits of the fetal surgery, as I understand, are that the damage to nerves may be stopped with the surgery. Any damage that has been done will not change, but the amniotic fluid flowing through the lesion causes damage throughout the pregnancy and that could be stopped early. This may give the baby a better chance of having more use of legs and lessens the likelihood of needing a shunt after birth. On the downside, it's basically guaranteed that you will have a premature baby if you do the surgery, with the average birth at 34 weeks. It's also a major stress on my body because I have already had one c-section, and this surgery plus delivery would account for two more.

We researched all of the study results and talked to our doctors, along with speaking to the doctors in Philadelphia. Eventually, we decided that we should at least go to Philadelphia for the consultation to see if we even qualify for the surgery. We set up a second Level 2 Ultrasound at IU North to see if anything had changed with the baby at 23 weeks. We had the same results as before: a sacral spinal lesion, arnold chiari malformation, and the doctors said mild to moderate hydrocephalus at this point. We had the doctor send the results of the ultrasound to Philadelphia to be looked over. I spoke with the doctor in Philadelphia the next day and my main question was if Bennett's lesion was too low for the surgery. St. Vincent's MFM was the location of our first ultrasound, and they concluded that the lesion was around S2-S3. The second ultrasound was at IU North and they agreed that the lesion was mid-sacral. The doctor in Philadelphia restated that they would not perform the surgery if the lesion started below S1. She said that we were welcome to go to Philadelphia for a consultation, but that they would determine lesion level by ultrasound as well. We decided that we felt confident enough that two MFM departments found the same results, and this doctor was looking at the u/s results as well and not saying that she thought it could be incorrect. As soon as we made the decision, our family stress level went down and we felt so much better. We have set up our appointments with the Riley Neurosurgeon and Developmental Pediatric area at Riley. We are still seeing our regular OBGYN and have met the high risk doctor who will be delivering Bennett. Right now, it's just a waiting game and I'm hoping that our future appointments will help us to feel more comfortable with the post-natal surgery or surgeries that Bennett will endure. Overall, we feel that we have made the best decision for our family with our current knowledge and information.

The Big Ultrasound

We went in for our routine ultrasound when baby was almost 19 weeks along. We found out the great, but surprising news that we are having a second boy! I was convinced it was a girl because this pregnancy has been so different than my first. I was shocked at first, but quickly Andrew pointed out all of the fun things about having two boys! I realized how exciting it would be for Andrew and Matthew, and I also was happy when I thought about how bonded Matthew and I have been since he was born! Another boy is a perfect addition to our family!

After the ultrasound, we met with the doctor. She surprised us with news that there were some problems found with the baby. We heard something about a spot on the spine, fluid on the brain, and a calcification in the heart. The doctor told us that she wanted a level 2 ultrasound and sent us on our way to the Maternal Fetal Medicine office immediately. Our thoughts were all over the place and we were devastated by the news that something was wrong with our baby. We had no idea what was wrong or the severity of the problems, and we didn't know if the baby was even going to survive. At MFM, we had a lengthy ultrasound. I remember asking the technician if she saw all the problems they mentioned. When she told me yes, I asked if she knew what it meant. She mentioned that it could be Spina Bifida. As I heard the words, I knew right away that it sounded familiar. I had no idea what it could mean for our baby, but I knew I had heard it was bad, really bad. The doctor explained the condition as best she could, but it all sounded so somber and frightening. She recommended we have an amniocentesis in order to rule out any other chromosomal abnormalities. We decided to have it done right away. It was not quite as scary as I had imagined, and I was so glad that I had less than 10 minutes to mentally prepare for it. It was another frightening prospect that there could be even more wrong with our child, but I wanted to be prepared for what we would be dealing with. When we left to go home, I was still clueless about what we were up against and Andrew and I were both an emotional mess.

For the next week, I researched constantly. I did not google "spina bifida" because I was afraid of the horrifying descriptions I might find about the condition. I did however look at blogs and try to find information from parents of children living with the condition. It was a very uplifting experience to find such positive and valuable wisdom from these families. It kept me hoping for the best, which was especially important during my 7-10 day amnio results wait. We finally got the call that all chromosomes looked good! I was so thankful that we would "only" be dealing with spina bifida. After that first week ended, I felt confident that we would get through whatever this will mean for our family. I even started desperately looking for a name so we could bond with our boy as much as possible and call him by name. Our baby is going to be another child in our family, and he will just come with a few extra care instructions. I am trying to take it all day by day, knowing that some days will be difficult and others will be amazing. And we will try to appreciate the amazing days even more. Andrew and I both liked the name Ben, so we decided to name our baby Bennett, meaning "little blessed one".