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I’m in the US. My seven month old daughter was born with Spina Bifida. It didn’t show on the ultrasound, and it was a total shock to us. I can’t be sure but it

by wincy 7y ago

I’m in the US. My seven month old daughter was born with Spina Bifida. It didn’t show on the ultrasound, and it was a total shock to us. I can’t be sure but it seemed to correlate to a flu my wife had during the period that spina bifida “develops” (rather the spinal cord fails to develop fully). The worst complication has to do with Chiari malformation, which affects her unconscious breathing. She gets upset or angry, and freezes up, turns purple, passes out, then requires CPR to be resuscitated. Most spina bifida babies do not have this complication. We were told children with this condition die. My wife obsessively reviewed the same papers the doctors had, and some others. She carefully googled every term she didn’t know. She discovered children prescribed clonidine had a MUCH improved prognosis. At her insistence and after some initial pushback and a very detailed email to the doctors, it was prescribed and my daughters condition improved substantially. She hasn’t had a single breath holding spell that’s required resuscitation since. It’s made us wary of the doctors recommendations. We feel like we have to be the experts, because if we’d blindly followed the doctors our daughter would likely be gone. She’s so good natured and friendly, and she’s happy. She’s happy to be here and we’re happy to have her. If we knew there was no hope, or that she’d be permanently mentally disabled, I can’t honestly say that we’d have fought this hard for her. It’s also taught me who my real friends are, my wife’s family has been so supportive while mine has retreated almost completely. People do NOT like being around tragedy if they can help it. They’ve given us “plenty of space”. My wife’s grandmother, who we weren’t close to before, has given us amazing outpourings of support and her time, visiting our daughter in the hospital almost every day. In the months leading up to our daughters birth grandma had seemed to be deteriorating due to dementia, but she has a new lease on life. I can’t say why this has happened, but it feels like a miracle. One of the best things that happened to me during all this was a gray beard software engineer overheard me talking about my daughter. He took me aside and told me he had spina bifida, and we talked at length about it, and it was one of the nicest things anyone has ever done for me. It made me have hope when before I had none. I never would have known he had it. He’s lived a long and fulfilling life, a life I want my daughter to have.

barking 7y ago
I hope it all works out great for your little one.
- wincy 7y ago
  Thank you, she’s really the happiest and most gregarious little kid. Being in the NICU for six months the infants you see have far worse problems than she does, and we are lucky to live in a nation that she can get treatment, and that given that care her lifespan prospects go from a year at best to potentially 70+.
eitally 7y ago
I'm thankful your wife had the wherewithal to persist in both her research and pestering of medical professionals. We recently faced a similar situation with our young daughter (was 20mo at the time), who was diagnosed with a rare intracardiac tumor last fall. The first prognosis we received (from the chief pediatric cardio-thoracic surgeon at Stanford) was that it was inoperable and we should take her home and enjoy her while she was healthy. Thankfully my wife also persisted and three additional opinions later we found the right place with the right professionals and demonstrated experience and our daughter is doing great post-surgery. We learned the same hard lesson you have, both regarding the healthcare community AND family/social support. I feel particularly bad for the huge population of folks who are unable -- for whatever reason, it could be lack of insurance or it could be lack of education, or lack of funds -- to ensure their family receive the best care possible.
- noobiemcfoob 7y ago
  Recognizing the medical industry as what it is can be really difficult. It's not just there is a bell curve of knowledge and ability, but something with more dimensions that accounts for a world as a big as ours. Just like I'm sure there are software shops out there doing what I would call impossible, not all doctors know the full extent of the practice or where those particularly skilled practitioners might be.
- wincy 7y ago
  I was abruptly fired and unemployed when my daughter was born, which paradoxically has saved us money in medical expenses, as a pregnant woman and her infant retroactively get Medicaid. So while we have primary insurance, the secondary Medicaid is active for a year before it has to be renewed (which we won’t do as my income is too high). It covers all the copays of her primary insurance and we haven’t had to pay a cent. It’s all been pretty surreal. We also got to deal with a bizarre situation of me breaking the health insurance bank at the contracting firm I worked for. When benefits renewal came up at the end of the year only a high deductible plan was available at $1220 a month! So we dumped their plan (I feel bad for everyone else, but what was I supposed to do?) and bought her a $325 a month plan with a $500 deductible. Technically I didn’t have to, because of the Medicaid, but it made me feel like as someone who makes close to six figures employed, I shouldn’t be taking government benefits just because they’re offered.
pradn 7y ago
Thank you for sharing. I wish you and your daughter all the best.
jojoo 7y ago
> He’s lived a long and fulfilling life, a life I want my daughter to have. I've only worked with three students with spina bifida in my career in special-ed but everyone of them was a positive-optimistic child with a lot of emotional intelligence. Everyone wants to befriend them because they are funny and kind.
- wincy 7y ago
  Hah it’s funny you say that because the engineer is well known as a hilarious guy at work. She is our second child and while the first is very social and gregarious, she’s just off the charts in her cooing, vocalizations, and smiling. Every nurse and volunteer at the NICU just loves to hold her and spend time with her. I think she’s going to get along wonderfully.
eatbitseveryday 7y ago
> very detailed email to the doctors Slightly off-topic question: emailing a doctor? I’m with Kaiser and doctor access is walled behind their kp.org site. No way to directly reach them, just messaging to their team, or via appointments.
- wincy 7y ago
  Right. It was via the social worker, she emailed the social worker and the articles and my wife’s summaries of it were relayed to the doctors. The doctors attitude was totally different after that, it seemed like they had a lot more respect for her and they used the information to make medical decisions (like the clonidine and a decompression surgery)
  - eatbitseveryday 7y ago
    I see, even in your case it's still a walled access to the MDs. I find that at least mildly upsetting, regardless.
    - wincy 7y ago
      Yep. I've looked into direct primary care which hole punches the doctor patient firewall, but I'm sure I'd have to negotiate a rate with the doctor for a special needs kid like my daughter. In my city though there's doctors who accept $50 a month GP direct payment and you can email them and communicate directly with your doctor. I interviewed a few of them, had a casual hour conversation with one about ketogenic diet and he recommended some books. So different than regular insurance doctors where you get virtually no time at all. Obviously not everyone can afford it since it bypasses insurance completely, but it's still an interesting concept.
ordinaryradical 7y ago
> If we knew there was no hope, or that she’d be permanently mentally disabled, I can’t honestly say that we’d have fought this hard for her. This makes sense and I don’t want to be insensitive but it got me wondering: has this experience changed the way you view abortion? I’ve heard “quality of life” as a strong argument for an abortion when doctors give a prognosis of serious or debilitating disease. Just curious how your experience has informed your thinking on this subject.
- wincy 7y ago
  My wife has more exposure to abortion related discussions because the Spina Bifida Facebook moms groups (there’s some dads but it’s almost all moms to be honest), constantly have women joining asking if they should abort. The mother’s feel strongly pressured by doctors to abort, but it’s a weird thing because you don’t know how bad the case is going to be. We’ve seen a dozen Spina Bifida babies come and go from the NICU, all of them with less complications than our little girl, and often home within a week. No tracheotomy, just a brain shunt and the back closing surgery. It’s a tough question. There seems to be an implicit assumption in a lot of abortion arguments that a reduction of suffering should be a goal in life, but maybe some suffering and struggle isn’t so bad. I’m also fairly libertarian in that I support abortion rights even though I don’t think we’d personally abort. I heard someone say recently that with abortion, maybe ideally we don’t want to live in a world where people don’t feel that’s their only option. A lot of these children, despite the issues, sure they might have to catheter themselves a few times a day and give themselves enemas and sleep with a CPAP, but is that better than not existing? I think so, but I don’t think it’s my place to tell other people what to believe. Life is certainly going to be a little harder for us, but even if she died tomorrow I don’t think I’d go back back and do anything differently, aside from maybe strongly encourage my wife to take a methylfolate supplement, which might have prevented the condition. My daughter certainly seems very happy to be here, and even though it hurts us, I think that it’ll be okay and maybe that can be okay. We’ve adopted a sort of Stoicism about it that gives my wife and I strength. I’m a person who also insisted on getting a colonoscopy with no sedation, so maybe I’m just a really weird guy. I’ve been chewing on your question all day and that’s what I’ve come up with, it’s an interesting question and I think there could be a lot more nuance around the discussions maybe not of what the laws are surrounding abortion, but our ethical framework and thoughtful reasoning for getting an abortion. I certainly still don’t think it should be illegal. If you make it illegal you end up with crazy things like in Columbia (I think), a woman with three children was arrested after coming to the hospital having a miscarriage, and was accused of aborting her child. Awful stuff.
taneq 7y ago
> My wife obsessively reviewed the same papers the doctors had, and some others. She carefully googled every term she didn’t know. She discovered [...] And this is something we need to remember in between smugly asserting GPs' pre-eminance and denouncing "doctor google" patients who have web searched and think they know what they're talking about. At this stage, a GP's education is nowhere near exhaustive when compared with a suitably motivated individual who has a scientific research education and access to the web.
- wincy 7y ago
  We found that because the complications of Spina Bifida covers so many different medical domains, we’ve had to try to keep the cardiologists, the pulmonologist, the neonatologists, gastroenterologists, and the neurosurgeons AND neurologists on the same page. The closest thing there is to a “Spina Bifida” expert we found was the head neurosurgeon at Washington university in St Louis, a state away from us. After complaining to the head of neurology at our children’s hospital we were able to send her test results and brain scans to him and get a second opinion. He definitely seemed to have insights other doctors didn’t, as well as not bullshitting us when he didn’t know something. He was also careful to point out that because he’d never actually examined her so his opinions were conjecture, not solid infallible facts. My favorite GP I’ve ever had told me “I don’t know, but I will find out”. We’ve really learned to bristle when our daughters doctors present the face of absolute certainty. It gets really tiring when it results in them talking in a really indecisive way and not giving a straight answer. I’m not a medical professional, but I’m a software engineer, I’m not a fool, but getting a doctor to straight talk to you the way an engineer would seems to be a rare event. We’ve had pulmonology suggest a tracheostomy’s multiple times, without discussing the drawbacks of the procedure, and after lots and lots of careful questions, then reasking the question until we get “real” answers about the merits of the procedure it -feels like- the actual reason they want to do it, and the reason children who get a hole in their throat have better results than children without is because once your child is given a trach medical insurance will pay for in home nursing care. Extracting that information was painful and took days of trying to pin down doctors, but it’s really made us feel like the doctors are either incompetent, malicious, or just too busy to care and want us to go away. Even getting them to “prove” she needed a trach via a sleep study was like pulling teeth to get scheduled, the doctors insisted on wanting to do it without the evidence then seemed irritated when the results came back that indicated the trach wouldn’t help her breathing.
escapologybb 7y ago
Rock on, I bet she's wonderful. Congratulations! If you find yourself getting low and want to talk to another grey beard hacker with spina bifida, just hit me up. I'm sure in my 41 years I can find something interesting to talk about! By the way, they said I would never make it to 12 months, then 5 years, then I would be dead by 15, then 25.... 41 years later... (Yes, I know that this is anecdata. But that's definitely the best kind of data, amirite?)

by wincy 7y ago

barking 7y ago

I hope it all works out great for your little one.

wincy 7y ago
Thank you, she’s really the happiest and most gregarious little kid. Being in the NICU for six months the infants you see have far worse problems than she does, and we are lucky to live in a nation that she can get treatment, and that given that care her lifespan prospects go from a year at best to potentially 70+.

eitally 7y ago

I'm thankful your wife had the wherewithal to persist in both her research and pestering of medical professionals. We recently faced a similar situation with our young daughter (was 20mo at the time), who was diagnosed with a rare intracardiac tumor last fall. The first prognosis we received (from the chief pediatric cardio-thoracic surgeon at Stanford) was that it was inoperable and we should take her home and enjoy her while she was healthy. Thankfully my wife also persisted and three additional opinions later we found the right place with the right professionals and demonstrated experience and our daughter is doing great post-surgery. We learned the same hard lesson you have, both regarding the healthcare community AND family/social support. I feel particularly bad for the huge population of folks who are unable -- for whatever reason, it could be lack of insurance or it could be lack of education, or lack of funds -- to ensure their family receive the best care possible.

noobiemcfoob 7y ago
Recognizing the medical industry as what it is can be really difficult. It's not just there is a bell curve of knowledge and ability, but something with more dimensions that accounts for a world as a big as ours. Just like I'm sure there are software shops out there doing what I would call impossible, not all doctors know the full extent of the practice or where those particularly skilled practitioners might be.
wincy 7y ago
I was abruptly fired and unemployed when my daughter was born, which paradoxically has saved us money in medical expenses, as a pregnant woman and her infant retroactively get Medicaid. So while we have primary insurance, the secondary Medicaid is active for a year before it has to be renewed (which we won’t do as my income is too high). It covers all the copays of her primary insurance and we haven’t had to pay a cent. It’s all been pretty surreal. We also got to deal with a bizarre situation of me breaking the health insurance bank at the contracting firm I worked for. When benefits renewal came up at the end of the year only a high deductible plan was available at $1220 a month! So we dumped their plan (I feel bad for everyone else, but what was I supposed to do?) and bought her a $325 a month plan with a $500 deductible. Technically I didn’t have to, because of the Medicaid, but it made me feel like as someone who makes close to six figures employed, I shouldn’t be taking government benefits just because they’re offered.

pradn 7y ago

Thank you for sharing. I wish you and your daughter all the best.

jojoo 7y ago

> He’s lived a long and fulfilling life, a life I want my daughter to have. I've only worked with three students with spina bifida in my career in special-ed but everyone of them was a positive-optimistic child with a lot of emotional intelligence. Everyone wants to befriend them because they are funny and kind.

wincy 7y ago
Hah it’s funny you say that because the engineer is well known as a hilarious guy at work. She is our second child and while the first is very social and gregarious, she’s just off the charts in her cooing, vocalizations, and smiling. Every nurse and volunteer at the NICU just loves to hold her and spend time with her. I think she’s going to get along wonderfully.

eatbitseveryday 7y ago

> very detailed email to the doctors Slightly off-topic question: emailing a doctor? I’m with Kaiser and doctor access is walled behind their kp.org site. No way to directly reach them, just messaging to their team, or via appointments.

wincy 7y ago
Right. It was via the social worker, she emailed the social worker and the articles and my wife’s summaries of it were relayed to the doctors. The doctors attitude was totally different after that, it seemed like they had a lot more respect for her and they used the information to make medical decisions (like the clonidine and a decompression surgery)
- eatbitseveryday 7y ago
  I see, even in your case it's still a walled access to the MDs. I find that at least mildly upsetting, regardless.
  - wincy 7y ago
    Yep. I've looked into direct primary care which hole punches the doctor patient firewall, but I'm sure I'd have to negotiate a rate with the doctor for a special needs kid like my daughter. In my city though there's doctors who accept $50 a month GP direct payment and you can email them and communicate directly with your doctor. I interviewed a few of them, had a casual hour conversation with one about ketogenic diet and he recommended some books. So different than regular insurance doctors where you get virtually no time at all. Obviously not everyone can afford it since it bypasses insurance completely, but it's still an interesting concept.

ordinaryradical 7y ago

> If we knew there was no hope, or that she’d be permanently mentally disabled, I can’t honestly say that we’d have fought this hard for her. This makes sense and I don’t want to be insensitive but it got me wondering: has this experience changed the way you view abortion? I’ve heard “quality of life” as a strong argument for an abortion when doctors give a prognosis of serious or debilitating disease. Just curious how your experience has informed your thinking on this subject.

wincy 7y ago
My wife has more exposure to abortion related discussions because the Spina Bifida Facebook moms groups (there’s some dads but it’s almost all moms to be honest), constantly have women joining asking if they should abort. The mother’s feel strongly pressured by doctors to abort, but it’s a weird thing because you don’t know how bad the case is going to be. We’ve seen a dozen Spina Bifida babies come and go from the NICU, all of them with less complications than our little girl, and often home within a week. No tracheotomy, just a brain shunt and the back closing surgery. It’s a tough question. There seems to be an implicit assumption in a lot of abortion arguments that a reduction of suffering should be a goal in life, but maybe some suffering and struggle isn’t so bad. I’m also fairly libertarian in that I support abortion rights even though I don’t think we’d personally abort. I heard someone say recently that with abortion, maybe ideally we don’t want to live in a world where people don’t feel that’s their only option. A lot of these children, despite the issues, sure they might have to catheter themselves a few times a day and give themselves enemas and sleep with a CPAP, but is that better than not existing? I think so, but I don’t think it’s my place to tell other people what to believe. Life is certainly going to be a little harder for us, but even if she died tomorrow I don’t think I’d go back back and do anything differently, aside from maybe strongly encourage my wife to take a methylfolate supplement, which might have prevented the condition. My daughter certainly seems very happy to be here, and even though it hurts us, I think that it’ll be okay and maybe that can be okay. We’ve adopted a sort of Stoicism about it that gives my wife and I strength. I’m a person who also insisted on getting a colonoscopy with no sedation, so maybe I’m just a really weird guy. I’ve been chewing on your question all day and that’s what I’ve come up with, it’s an interesting question and I think there could be a lot more nuance around the discussions maybe not of what the laws are surrounding abortion, but our ethical framework and thoughtful reasoning for getting an abortion. I certainly still don’t think it should be illegal. If you make it illegal you end up with crazy things like in Columbia (I think), a woman with three children was arrested after coming to the hospital having a miscarriage, and was accused of aborting her child. Awful stuff.

taneq 7y ago

> My wife obsessively reviewed the same papers the doctors had, and some others. She carefully googled every term she didn’t know. She discovered [...] And this is something we need to remember in between smugly asserting GPs' pre-eminance and denouncing "doctor google" patients who have web searched and think they know what they're talking about. At this stage, a GP's education is nowhere near exhaustive when compared with a suitably motivated individual who has a scientific research education and access to the web.

wincy 7y ago
We found that because the complications of Spina Bifida covers so many different medical domains, we’ve had to try to keep the cardiologists, the pulmonologist, the neonatologists, gastroenterologists, and the neurosurgeons AND neurologists on the same page. The closest thing there is to a “Spina Bifida” expert we found was the head neurosurgeon at Washington university in St Louis, a state away from us. After complaining to the head of neurology at our children’s hospital we were able to send her test results and brain scans to him and get a second opinion. He definitely seemed to have insights other doctors didn’t, as well as not bullshitting us when he didn’t know something. He was also careful to point out that because he’d never actually examined her so his opinions were conjecture, not solid infallible facts. My favorite GP I’ve ever had told me “I don’t know, but I will find out”. We’ve really learned to bristle when our daughters doctors present the face of absolute certainty. It gets really tiring when it results in them talking in a really indecisive way and not giving a straight answer. I’m not a medical professional, but I’m a software engineer, I’m not a fool, but getting a doctor to straight talk to you the way an engineer would seems to be a rare event. We’ve had pulmonology suggest a tracheostomy’s multiple times, without discussing the drawbacks of the procedure, and after lots and lots of careful questions, then reasking the question until we get “real” answers about the merits of the procedure it -feels like- the actual reason they want to do it, and the reason children who get a hole in their throat have better results than children without is because once your child is given a trach medical insurance will pay for in home nursing care. Extracting that information was painful and took days of trying to pin down doctors, but it’s really made us feel like the doctors are either incompetent, malicious, or just too busy to care and want us to go away. Even getting them to “prove” she needed a trach via a sleep study was like pulling teeth to get scheduled, the doctors insisted on wanting to do it without the evidence then seemed irritated when the results came back that indicated the trach wouldn’t help her breathing.

escapologybb 7y ago

Rock on, I bet she's wonderful. Congratulations! If you find yourself getting low and want to talk to another grey beard hacker with spina bifida, just hit me up. I'm sure in my 41 years I can find something interesting to talk about! By the way, they said I would never make it to 12 months, then 5 years, then I would be dead by 15, then 25.... 41 years later... (Yes, I know that this is anecdata. But that's definitely the best kind of data, amirite?)