Our morning started with a 1 1/2 hour ultrasound. The tech took pictures of everything and explained when she could. When we asked a question that she wasn't able to answer, we got the "They will explain a little later" answer. It was amazing to be able to see Jackson for as long as we did. It was also amazing to see all of his organs. The best part was watching his heart work and see the four chambers.
She looked at Jackson's spine last. Our little man is quite the stinker and was determined to make it difficult to see all of his lesion. Eventually though, she got a great picture of the lesion for the doctors to look at. We got several ultrasound pictures to take with us and even got some 3-D ones and were able to see his handsome face for the first time. Next stop, the conference room to get our official results and discuss prenatal surgery.
The people that we were going to be meeting throughout the day are as follows:
- Dr. Carroll and Dr. Bennett are part of the OBGYN team and handle the obstetrics and maternal fetal medicine side of the surgery team.
- Martha Dudek the genetics/amnio consult
- Dr. Wellons the neurosurgeon
- NICU
Dr. Carroll and Ms. Mary (fetal program coordinator) were the first ones that we met with. Dr. Carroll brought up Jackson's ultrasound pictures on the computer and started discussing the findings with Matt and I. She explained that all of his organs were normal and functioning properly - she didn't see any issues which was a good thing. She moved on to his head. She discussed the finding of lemon and banana sign and confirmed Chiari malformation. She then talked about Jackson's ventricles. The ventricles in the brain are like pools that are filled with cerebrospinal fluid (CSF) which bathes and cushions the brain and spinal cord within their bony confines. The ultrasound showed that while Jackson's ventricles were enlarged, they were within the normal limits which was great news. The last thing that we looked at was Jackson's spine. The news that we were waiting for - where is Jackson's lesion and what does it mean? Dr. Carroll gave us an illustration showing the different levels of the spine and what each levels function is.
After explaining everything having to do with Jackson and his lesion, she went on to explain that we do qualify for fetal surgery if we were interested. The first time I spoke with Ms. Mary on the phone, she explained that they would come across as not recommending the fetal surgery, but it was simply because they want to make sure that we understand the risks that come with the surgery for baby and mom. Sure enough, I felt that we were being talked out of the surgery, but I kept reminding myself of what Ms. Mary said on the phone.
So, let's talk risks.
| Outcome | Finding | Implication |
| Premature delivery | Premature births (with respiratory problems) were more common in the prenatally treated group (13% were delivered before 30 weeks of gestation). The average age at delivery was 34.1 weeks for babies who had prenatal surgery compared with 37.3 weeks for those who had surgery after birth. | Premature delivery is associated with serious problems such as difficulty breathing and even cerebral palsy. |
| Pregnancy complications | One-third of mothers who had prenatal surgery had thinning of the uterus or an abnormal opening (dehiscence) where surgery was performed. Other complications included decreased fluid in the uterus, and problems with the membranes surrounding the baby. | These complications may affect the mothers' ability to have subsequent pregnancies. |
| Tethered spinal cord | Infants in the prenatal-surgery group underwent more procedures for delayed spinal cord tethering. | Tethering of the spinal cord (tying down from scars) can cause additional loss of function; this could negate the advantages in mobility that were associated with prenatal treatment. |
The next person we met with was Martha Dudek, the genetics counselor. The first thing that Martha explained was that Jackson having spina bifida was in no way my fault. There was nothing that I did or didn't do that could have caused him to have this birth defect.
***Those reading this that are feeling like it's your fault that your child has spina bifida, please hear me, it's NOT your fault... It's NOT your fault... It's NOT your fault. I know that I can say that until I'm blue in the face and you would still have the feeling that you could have done something more - I get it, I was there. However, please try and stop yourself from thinking this. We've got to make sure that we aren't beating ourselves up for something that we had NO control over. Our children already had spina bifida before we even knew that we were pregnant. Remember, this diagnosis doesn't define your child. :) OK, back on topic - oops!*** Martha also discussed our amnio results with us. She assured us that the amnio was perfectly normal and there weren't any issues. After hearing this, a huge weight was lifted off of my shoulders. I had been anxiously waiting for my amnio results and couldn't get anyone on the phone at the doctor's office that took the test. My anxiety level was extremely high due to not getting my results back in a week like I was suppose to. It ended up taking two weeks and I had to get them from Vandy who didn't even draw the amnio. However, that's an entire different issue that will be discussed with the doctor that was involved. :)
We quickly met with the NICU doctor and learned what would be involved when Jackson is born. With Jackson being born at 37 weeks and with his spina bifida, he will need to stay in the NICU for a little while. We talked about the tests that will be done once he's born and what to expect during his stay for Jackson and for us.
Dr. Wellons, the pediatric neurosurgeon was the last person that we met with. Dr. Wellons went into a little bit more detail concerning Jackson's lesion level and size. He explained that with Jackson's lesion level, he has seen children walk with knee high braces. However, with the prenatal surgery, he hopes that the ability level will be lowered to an L5 instead of L3. We found out that Jackson's lesion is the largest that they have seen measuring 2cm by 4 cm. Hearing that was so scary and heartbreaking. He told us that he would probably end up having to cut "release incisions" on his sides to release the tension so that he could close Jackson's back since the opening was so large. The release incisions would be covered with a type of mesh that would hopefully heal while Jackson is still in utero. However, if they don't heal, Jackson would need another minor surgery once born to close those incisions to prevent infection. Jackson's back would be closed with donor skin and told us that those heal very well while in utero and shouldn't be an issue. He then explained that the main goal for the surgery is to try and prevent the need for a shunt. With Jackson's ventricles the size that they are in utero he wouldn't need a shunt. However, if we chose to not have the surgery, that would most likely change once he was born - another unknown. When we asked if he believed if Jackson would benefit from the prenatal surgery, he strongly said yes. He told us that closing Jackson's back as quickly as possible will help prevent anymore damage from being done. He also explained that by closing his back, the spinal fluid will have time to start circulating like it's suppose to and start conditioning his nerves. When we heard him say that he highly recommended the surgery, our minds were made up.
Ms. Mary explained to us to take the weekend to think about everything that was discussed and to call on Monday with our decision. We already knew what we were going to do, but we appreciated being given the time to think. If having the surgery is the best option for Jackson, then that's what is going to happen. Our son deserves every chance and every possibility out there. Surgery has been scheduled for April 7th! I am terrified, but I also know that this is the best possible thing for Jackson.
Crystal
No comments:
Post a Comment