We recently had our 20 week scan for our baby, excitement turned to heart ache when we found our our beautiful baby will have Spina Bifida. It’s early days yet, we have been offered a termination but at this stage we will continue with the pregnancy. I’m trying not to overly research on Dr Google. The best person to talk to would be our specialist but we are still waiting for hospital referrals. I wanted to hear from real parents of SB children. There is a lot of information about about what to except when baby gets here and not much on what to except when it comes to the rest of my pregnancy, Labour and delivery. I’m trying to be the bravest I can for our little baby, he/she will need me to be their biggest advocate.
4 Replies
I'm not the parent of a Spina Bifida child but I do look after one. She is a beautiful little girl, she took longer to meet her physical milestones but is very brilliant and met other milestones. Still figuring out how to walk at 2, didn't crawl properly till she was 16mnths but could still get around. With the help of physiotherapy she has come a long way in the last 6 months, learning to stand, staying in a standing position, walking with help. But she is a brilliant little girl, very smart, very clued on and cheeky. They are beautiful children dispite what they have been dealt.
I'm married to a spina bifida baby! My hubby is 46 years of age and was born when there were no ultrasounds to detect these things prior to birth so my mother-in-law gave birth knowing nothing. He had the most severe form, Myelomeningocele, where he was born with a hole in his back, near his tailbone, and a sac full of spinal fluid poking out. He was born in a regional hospital and rushed to the bigger hospital in the capital city, immediately operated on and his parents were warned that even if he lived through it he would likely not walk independently, be able to live by himself or take care of himself. Well, he showed them! Yes, he has issues that are ongoing. He has some bladder issues, mainly related to sensation and control, but has so far avoided catheters and other intervention. He is susceptible to bladder and kidney infections, he has had kidney stones also. He also has a lack of feeling in his hands and feet so we have to be careful of cuts and potential infections, he has to choose shoes carefully, etc. He has worked full time since he was very young, he even served in the air force for a time. Given his initial prognosis I'd say he has done pretty well.
Take everything as it comes. Listen to the specialists. I have heard that they can do plenty for it now, even potentially in utero. I'm certain that you and your baby will be well looked after. Best of luck to you.
I'm going to be the only one who is going against what everyone else is saying here. What is your main reason for having this baby? Have you ever stopped to think what this child is going to go through for the rest of their life? As soon as it's out of the womb it's going to have surgery after surgery, require constant care at a high level. Very likely going to have mental disabilities as well as physical handicaps. This child is going to suffer every day for the rest of its life. And have you even asked how your husband feels or is this just your decision? You have a moral obligation to this child and your husband and society NOT to go through with this pregnancy. Have you even asked carers of disabled people what it's really like taking care of a child with a profound disability? Have you even considered the cost of raising one? And before you think 100% of it is going to be funded by tax payers dollars you've got it dead wrong. What's going to happen to your child when you pass? Push the responsibility onto another family member? Society? We have these scans now for a reason. So we can pick up on these things and prevent them. For you to WHOLEHEARTEDLY CHOOSE to bring this child into the world FULL WELL KNOWING the consequences of your actions and the pain you will be inflicting upon this child and the people around you is DISGUSTING. Selfish and wrong!!! Please reconsider your decision!!!
Everyone is entitled to differing opinions but to call someone disgusting for making a different decision on an ethical matter probably says a lot about you and not particularly complimentary.
My brother has Spina Bifida. He had a few medical problems as a teenager. It is only a mild form and at 60 he has no ongoing health problems, certainly no mental disabilities and is a productive member of society and a well loved father, grandfather, son and brother.
There are many different levels of Spina Bifida. The medical team looking after the OP will be able to give the parents very detailed iformation about the escpected outcomes and future medical issues. From that they will be able to make an informed choice that will best suit their situation. Whatever that choice is deserves to be supported but not judged.