Post # 1
I’m not sure if this would be in babies, or pregnancy, but here it goes.
I am so excited that my family has been super blessed this year. My sister has a beautiful, healthy, baby girl. I have my beautiful, so far healthy, Sophie, and my brother’s girlfriend is due February. She just found out she is also expecting a girl. Yay for getting full use of all baby clothes (:
Now, she also found out the baby has Spina Bifida. They gave her three options:
1. Terminate the pregnancy. (Not really an option for her, thank God).
2. Operate now, or at 20+ weeks of pregnancy. The doctor said this procedure is relatively new but not experimental. The benefit is the baby having time in the womb to hopefully create nerves to replace the missing ones. This procedure would mean strict bed rest for the rest of the pregnancy and a c-section at 38 weeks.
3. Wait until baby is born to operate.
Has anyone been through this? Anysuggestions?
Prayers would be greatly appreciated as well.
Post # 3
It would involve a huge amount of research, but if the outlook is better for surgery sooner, that is what I would do. Prayers for sure!
Post # 4
My baby sister has spina bifida and had the surgery when she was an infant. We had not yet adopted her, so I don’t have any details regarding that.
I personally would either operate now or operate after baby was born. That part I would base on research and medical opinions.
I did want to share this – my sister has another health issue that is unrelated, but for the most part her spina bifida is not a big deal to her health. She doesn’t have great balance and you can tell something is ‘off’ when she runs, but only if you know what to look for. Otherwise she is happy and healthy. 🙂
Post # 5
Not knowing enough about the prognosis for the operation, I voted “terminate”. If it were my baby, I’d be very sad about it, but unless there was a really good chance the baby would be able to live a normal life and not confined to a wheelchair with stunted, useless legs, I think we would both be in agreement that termination would be best for everyone involved. But if I could be convinced the operation would be successful, then I’d vote for that (at the 20 week mark, not after birth).
I had a friend in high school with spina bifida and the other kids were just rotten to him (like they would flip his wheelchair over and just leaving him lying helpless in the hallway and stuff like that) and was often resentful that he couldn’t do normal teenage things or live a full life. He was very embarrassed by his condition and suffered from a lot of self-loathing. I guess after seeing how miserable he was, I feel like it would be selfish to force my own child to live that way.
Post # 6
@Edelweiss: I don’t know, I don’t think your friend’s experience is really the norm… I used to work at an inpatient/outpatient rehabilitation hospital for kids with disabilities and I actually ran a research study for children & adolescents with spina bifida (looking at behavioral treatments for continence issues). The range of disability caused by SB is huge… some people have it and you’d never know it… others have it and need back or leg braces… some need wheelchairs (fairly rare). Most (actually, I’m pretty sure ALL) of the children/adolecents with whom I worked were happy and had very full lives despite their disability. SB can cause problems with mobility, continence, and some cognitive deficits (again, ranging from really subtle to more serious – but in specific areas, not global deficits), but I think a lot depends on the severity, home environment, amount of therapy/intervention/supports, etc. Lots of adolescents suffer from depression, self-loathing, and bullying without any kind of physical disability… it sounds like your friend had a hard time coping with his illness, but I’m just trying to point out that adolescents can have a hard time coping with all kinds of things… having a physical limitation/disability DOES NOT guarantee unhappiness, by any means.
OP – I will keep your SIL in my prayers. Let me know if you have any specific questions… I know some of the country’s best SB docs!
Post # 7
I would choose the option to operate either now or after the baby is born, depending on the information I had regarding the risks and benefits of each of those choices.
Post # 8
Termination would not be an option for me, whatsoever.
If the operation now or at 20 weeks was going to give the baby a better chance of developing more healthy, I would 100% try that.
OP, if that surgery doesn’t work, do you know if there are more surgeries to try after birth?
Post # 9
My daughter was born with a tethered spinal wich is a mild form of spina bifida. Prior to her birth we had not known anything was amiss. In fact, the only way the doctors were alerted to her condition was after immediate testing when they noticed a hemangioma at the base of her spine upon birth. At 6 months old she had spinal corrective surgery and im happy to say that other than a little scar you would never know she was ever in danger of having any issue.
I’ve done alot of research but i cant say that im an expert especially in this case where it seems so much severe, but what i can say is that i have read so much about the wonderful advancements in technology with in womb surgey for this problem. if the issue can be corrected in development there s so much of a better chance for success however it would completely depend on how severe the issue is.
If the doctors believe that they will be successful, i would go through with it if it were me.
Post # 10
Though I am 100% pro-choice, as an individual with a form of spina bifida, I am really saddened by the votes to terminate the pregnancy. There are a range of impairments that may come from a spina bifida diagnosis (some quite minimal), and unfortunately some doctors are inclined to encourage termination without giving the parents a very clear picture of the types of spina bifida and what the diagnosis may mean for their child.
I would encourage her to get as much education as possible before making a decision and to visit http://spinabifidaconnection.com/forumdisplay.php?f=5 online. There is a section on Spina Bifida Connection for new parents, and several threads started by parents who just found out their child has spina bifida and would like support from other parents and adults who have the diagnosis. While she ultimately will need to decide the best course of action for her and her boyfriend, there are places she can go for other parents who have faced similar situations.
Post # 11
I would base the decision on when to operate, on what the doctors suggest. You really have to be guided by the experts in this.
Personally I feel that terminating a pregnancy SOLELY due to the potential or actual disability of the child is a manifestation of deeply-held, bigoted beliefs about disabled people, their capablities and the value of their lives. What exactly is a “full” life and why should I get to define it for someone else? Most people who interact with disabled people on a regular basis realize that even people with serious disabilities are just regular human beings exactly like themselves. We all have challenges and limitations, some are more “physical” than others.
There are a lot of blogs by parents of children with spina bifida. Maybe look some up and provide her with a list? I am sure the spina bifida community would be able to provide more insight about what treatments are most effective, when.
Post # 12
Working in a large childrens hospital in an intensive care unit, I would vote for termination if it were my child. Even though I understand the severity of SB can vary greatly (I care for kids with SB often), it is still not a life I’d want for my child.
Since termination is not a choice for this mother, I’d recommend obtaining a 2nd opinion in this situation. Working with physicians everyday, I’ve learned that not ALL physicians are created equal. Some are amazing, some are not. I’d get a 2nd opinion and go with the physician who specializes in SB or has the highest success rate. I’d also make sure that this procedure was done in a large fetal care center to ensure the best care.
Post # 13
It would depend on lots of research & which would be safer – A. Surgery at 20 weeks+ or B. Surgery after birth.
Which ever seemed safer for baby is what I would do after asking for several opinions from different doctors, researching, ect.
Also OP prayers are being sent!
Post # 14
I’d seek out the best doctor for immediate operation and do whatever it took to save my baby.
Hank Williams had spina bifida.
Post # 15
@Magdalena: I agree. As someone who works with disabled children and as someone who has the happiest person on Earth for a sister (I am not exaggerating) I just…it makes me really sad. She was put up for adoption by her bio parents because of her disability. They had no idea that the little girl they gave up has little to no side effects of her “disability.” Lucky for us I guess! I just can’t imagine the world without her in it. She brightens the day of anyone she meets. I’m not trying to get soap-box-ranty, but…I’ve never had such a reaction to a poll before. It makes me sad.
Post # 16
Thank you so much for the opinions. It makes me feel a little better knowing that my niece still has a chance at a happy, well rounded life. I know a guy who has spina bifida, although I don’t know the specifics, and he is a great guy. We are lucky enough to be in California and have UCLA medical center or even the Children’s Hospital in Orange County (CHOC), which has an amazing facility. My brother’s girlfriend said the doctor recommends the hospital in San Francisco, which specializes in Spina Bifida. From what the doctors were able to tell, the problem seems to be on her lower spine which means she should have an awesome chance of being a pretty active person. Thank you all for you opinions and I will be sure to update on any decisions and outcomes in case it helps someone else in the future. (: