Now that I got everything up to date, here is the latest.... I had a nearly 1.5 hour conversation with the nurse coordinator for the SB clinic in Oakland today. She was quite a talker- haha! She had lots to say and answered all the questions I could think of, so it was great. Here is what we talked about
1. The SB clinic in Oakland is where all Spina Bifida (SB) patients in No CA Kaiser go. For the first couple years Natalie will be seen there every three months. Then it will go to every 6 months and by the time she’s in elementary school it will be one time a year. While at clinic, there will be a team of approximately 12 doctors/specialists who will be evaluating her (neuro, developmental specialist, orthopedics, urologist, OT, PT, etc.) Besides these quarterly appointments, she will also see her neurosurgeon in Roseville and the pediatric urologist in Roseville. Oh, and of course all her regular well baby visits….. oi. The clinic will also be there to assist with necessary supplies (like catheters) as well as helping communicate and navigate state agencies.
2. We should expect a 4-6 weeks NICU stay depending on if she will need a shunt or not. She said they recently had one baby girl go home after 3 weeks, but she didn’t want to give us false hope. Kaiser doesn’t want to send baby home until the incision is well healed so as to not risk infection or leaking spinal fluid.
3. I asked if there were pediatricians with Kaiser that they would be able to direct us to who would be knowledgeable with SB and she said she could. They have patients in our area so they know the pediatricians these patients are seeing, but she said I will always have the SB clinic at my disposal for questions and concerns. They will be able to better direct me with questions in knowing if it is just normal baby stuff or if it is SB related and will advise me and the pediatrician as well. So, that was good to know.
4. She reiterated that the outcome with Sacral SB is good… as good as it can be with a SB diagnosis that is. Statistically most babies with sacral SB will be able to walk with little to no assistance, it is much less likely that she will need a shunt with sacral SB as opposed to lesions high on the spinal column, but it’s nearly positive that she will have a bladder/bowel issues. She will be catheterized from birth. Of course, you never do know until the baby is here, but this would be the typical outcome for sacral SB. We did talk extensively about Natalie’s ultrasound findings in particular since she does have sacral SB, but also has Arnold-Chiari II Malformation and early signs of hydrocephalus. I already knew all these findings are typical with SB, but I wanted to know if this would make it any more likely that she will need a shunt. The answer was no. She said nearly all babies with an open neural tube defect, like Natalie has, will have Chiari II because the pressure of the spinal fluid is being released through the hole in her tube rather than building up which causes the brain to form oddly. This is also why Natalie’s head is so small in comparison to her body (her head is less than the 5% while the rest of her her body is in the 50%.) This is all normal for SB… Her head may be small at first, but when they close up her spine it will all normalize. Or she will develop hydrocephalus and need a shunt. Only time will tell.
5. She asked if the perinatologist had spoken with me about delivery and I told her I had been told a C-section would be necessary. Well, I guess that is not the case necessarily…. She told me there was a big study that showed that there is no effect on the outcome of the baby in a vaginal birth vs. cesarean birth. She said some neurosurgeons do prefer a c-section simply bc it is predictable and they are able to plan when the baby will arrive and schedule OR time for the babies neurosurgery when they have all their team and staff in the hospital. In Oakland they often do a scheduled induction at 38 weeks (ish) so the neuro team can still roughly plan when the babies surgery will be rather than waiting for spontaneous labor. I told her Aaron’s concerns of bacteria and opening up Natalie to infection with a vaginal birth as opposed to the more sterile environment of the OR room and she assured me that it does not really affect anything. The nerves that are exposed are already damaged/dead and are not going to be damaged any further by delivering vaginally. We will of course discuss this further with the pedi neurosurgeon and the perinatologist who will be in charge of my care.
6. We talked about the neurosurgeon in Roseville. She said she likes him a lot and the families who have worked with him all have good things to say. She said beyond being a great neurosurgeon, he also has a great bedside manner and is very personable. So, parents have been very comfortable with him. Something that I am not sure about, though, is that they have only have FOUR babies born at Kaiser Roseville with SB in the last two years! FOUR!! So…. I’m not sure about that. She said we can ask to deliver in Oakland if we are more comfortable with that, so…. IDK.
7. I was told to let her know if I/we would like to talk to other parents of children with SB to ask questions. I think I would like that… Also, on clinic days they do a support group of sorts for about an hour so parents can talk and share experiences. She said there are 5 or 6 other families in the Stockton area and she *thinks* some of them may meet up outside of clinic at time, but she was not sure. It is just beyond amazing to me how few families there are locally… SB is fairly common so this tells you just how high the abortion rate is for babies diagnosed in utero with SB. So sad….