Doctors like scared rabbits...

[JohnK]

My wife and I went to the (semi) local university hospital for another round of sonagrams and visits with perenatologists and pediatricians. We are working on a birthing plan and just doing what seem to me to be redundant diagnosis. Over and over, the doctors are telling us that my son has s.b., and I look at this perenatologist and want MORE info than that. She is giving us information we have already heard (and bloody well memorized.) At which point this woman's voice begins to crack and she is standing here welling up! A bloody doctor! What gives? Perenatologists are the doctor's who deal with high risk and "problem" pregnancies but they get upset about a tough subject? Maybe I am a jerk with high expectations but these doctor's aren't inspiring confidence and they are upsetting my wife... I am also geting anxious over Liam's arrival... We have him at one hospital, then they ship him down the road to children's, so my wife is in one hospital, my Liam is at children's in surgery, and my other boy is with the in-laws... just scattered. What is a daddy to do?:help::help:

[LisaJoy]

I can give you at least a partial explanation for this. I've read a few academic studies of physicians' attitudes toward disability and toward sb. Obstetricians, perinatologists, and pediatricians are significantly more negative about disability in general and spina bifida in particular than the general population. Your perinatologist is tearing up because she has no idea what great kids kids with spina bifida are! She's never seen one beyond the immediate post-birth period.

Hang in there. When you start dealing with the people who deal with sb over the long haul -- pediatric neurosurgeons, orthopedists, and urologists -- you will get much more realistic (i.e. positive) responses.

The sad thing is that this negativity toward parents and unborn children with sb is the rule rather than the exception.

Just hang out here with us some -- we'll perk you up, while not sugar-coating the tough stuff.

You & the wife should spend some times looking at the picture albums and some of the blogs -- several moms have links to their blogs in their signature.

http://ourlittlegibblet.blogspot.com/
http://babyboypenny.blogspot.com/2010/07/stand-and-deliver.html

The second one has a tab for "our sb buddies" that has a bunch of other links, some of them to people who participate in this forum and some not.

[n3rdchik]

just wanted to say, that sux. sending good thoughts your way

i will type something more - once i have freed my hand ffrom a fussy lil guy

[Amnada]

Hi John,
You seem to be doing the right thing! Participating in this forum and asking the right questions. LisaJoy is completely right that perinatologists are not the most SB informed. But that is why Liam will be transferred to the children's hospital where they have done this before.

I know that it put alot of pressure on my husband when my son and myself were in 2 different hospitals. I kept sending him over to take pictures and bring them back to me! I also had extended family staying with me when my husband was with the baby.

I did not want my older daughter to come to the hospital at all so that impacted who could come see me as well. Everything will all work themselves out in the end, once Liam is here.

[Jill]

Just wanted to say :( Sometimes doctors suck. It's true what the others are saying. It will all work out once he's here. Remember when your first boy was born? It'll be like that again, I promise. Happy tears, eurphoria, amazement, awe. The days/weeks in the hospital will seem like an eternity while you're in it, but looking back, it's a blink and then the fun stuff begins. :)

[ainemc]

That is annoying, ive got told what spina bifida and hydrocephalus is so many times, unfortunately the same stuff gets repeated over and over again..
i also found that when my daughter was born we spoke to people who actually knew alot about spina bifida and weren't as negative as the doctors we spoke to during my pregnancy.
The hospital stay does suck, my partner was running between me and Caitlin as she was at the children's hospital and i was in the main hospital but that will only be for around 3days and then your wife will be out and you can spilt your time between hospital and your son who is with your in laws. we were in for 17days which at the time felt like forever, but now its like a distant memory, so much good stuff happens when you bring your child home. I can barely remember the hospital stay now and it was only 7months ago, before you know it it will be the same for you guys too :) Love the name Liam by the way, good choice :)

[Dodger67]

Stop talking to the dumb bunnies.
Go to the childrens hospital for further info - if its something we can't deal with here.
Of course I'm confident enough (some might say arrogant) to say we can probably deal with most of your questions right here anyway.:fyi:
Between the lot of us we probably have more experience of SB than any ten academic hospitals put together.

[Kari]

Your perinatologist is tearing up because she has no idea what great kids kids with spina bifida are! She's never seen one beyond the immediate post-birth period.


I think that this is very true. I had a fabulous perinatologist that was very comforting during the diagnosis u/s and amnio. About once a year when I'm in the area, I drop by with bagels, muffins, or cookies, etc. and a thank you card. I always have all three kids with me, and they are happy to see Zach and how he is progressing. They ask a lot of questions and take pictures of him to hang in their office.

I just think it is very important for these doctors to see our babies as they grow up so that they have a better picture for the future when they are working with new families.

[JohnK]

Thank you guys for the support. I guess I am just a little frustrated, I read my post and now it sounds like a rant... or a tantrum!:D It is just hard right now, the last two months of this pregnancy seem like an eternity. I just want Liam to get here so I can see what we are going to need and what he is up against! He is sitting breach so they could not get good shots of his spine at the last sonogram. My wife is having a tougher time with this than I am, I think, so I am trying my hardest to keep morale up around my place... I find that we are playing with my other son, Aiden, a great deal. I know that this will be a marathon once Liam is born and I wonder how you all find a balance between caring for/spending time with your kids who have s.b. and spending time with your kids that don't? Is their a way to balance that? I am so glad to have found this site!

[Amnada]

Feel free to rant and tantrum here! Alot of us have been in the exact same positition and felt the same things - so you are not alone. Has your wife looked at this site, or the one of baby center, or any of the blogs? I know that for me all of those things helped me to feel better about what was going on.
Not to say there aren't bad days (or weeks), but it does get better. For me (and alot of others have said this) pregnancy was the hardest part. Because you don't know, you don't have him, there is all the 'could-be's' that doctors love to throw out there.

I worried so much about how my daughter would be impacted - she was 19 months when my son was born. But she adjusted amazingly and has claimed him as her own (My Nick). I tell my husband that we have 2 kids, because there are 2 of us. Yes there are days when we don't play with her as much as I'd like, but I try to include her with things I do with Nick, and I try to do things that are just for her.

[Jill]

Balancing between kids isn't as hard as you'll think, at least not at the start because that's all I know so far! ;) The first couple weeks in the hospital are rough, no fixing that. You'll be torn between wanting to be in the hospital with Liam and having your older son miss you terribly. But it's over and then you're home again. Expect that he'll go through some separation issues/tantrums/behaviour/clinginess or however else he may cope with it. It helps if everyone he's with treats him staying with them like a vacation and does really fun stuff.

Once Liam is home though, it's not very different than bringing any baby home. My oldest daughter took some time to adjust to sharing me when I brought home my middle child and both girls had to do it again when I brought home Kingsley. The SB doesn't make it easier or harder because there isn't a lot of 'caring' for them that you wouldn't do with a typical baby - they eat, sleep, cuddle, poop. If you have to cath them, that just makes diapers a little bit longer. They may sleep differently at first (tummy) or wear their pj's backwards. That all ends after about 4-6 weeks though and then they really are just like any other baby. King has stretches we have to do, but I just do that when we play with him, like we would've done anyway. He takes medicine, but that's a whole 1 minute a day that is involved there. :p Otherwise, same old baby stuff.

Appointments do take up some time, but the girls are with one of the Grandma's when I take him, so there's no complaints then. :D I'd say there's only 1 or 2 a month though and the girls both got flu vaccines this past winter so the have no interest in seeing a doctor anytime soon. No jealousy there! ;)