Five Months Pregnant and Found Out My Baby Has Spina Bifidia

I am so sorry. You are going to the right place- I have a daughter with some special needs- Please let me know if there is anything that I can do from here. You all are in my thoughts. Carey

My best friend for the past 13 years has Spina Bifida. It may feel like it, but it isn't the end of the world. With all the advances in science these days, you will more than likely have nothing to worry about. I will keep you in my thoughts.

My thoughts and prayers go out to you and your family. Lots of great suggestions have already been posted, but I also want to add that there has been many successful in utero spinal bifida surgeries performed. Do a search on the internet. ( I think the drs are in Pittsburg) Ask about that also, get second opinions.
You need to collect the info you'll need for your little one to have the best care. My son was born with a rare seizure disorder. I was told when he was four the technology would catch up to what he needed someday, At Age 20 it did, he had brain sugery and has not had a seizure since right before they did the surgery. And 2 1/2 yrs later he's off meds!
RIGHT now, the technology is there for what your baby needs!
She is still your bundle of Joy! Just needs a little 'help' getting those parts put together!
God BLess!
M.

I have to say that I cant truly feel your pain, but I know how scared you must be. My advice, and maybe you are already doing this, is pray. Prayer is powerful. If you are a little put-off by this, I am sorry. I dont mean to offend, but when miracles happen (like your baby girl), we take a different view of life from where we used to be standing.
Prayer is free, it will calm you and if its Gods will, help your child.
I wish the best for you and your family.
-J.

I am viewing your message now and I would like to know what is the findings. I have a child with PDD(NOS) branch of Autism. She is 8 years old. You can email privately. I can tell you some things about children with disabilities.
____@____.com

H., I want to let you know that my thoughts and prayers are with you. I am also 5 months pregnant and my heart just goes out to you. If you need anything email me at ____@____.com and I will be here for you! God bless you and your family.
I wishing for all the best for you all.
A.

I am so sorry you had to hear that, I am praying that you and your baby girl will be alright. I am not sure if you know about this website whattoexpect.com you its kinda like this expect you talk to ladies that are about the same due date as you are. I was apart of that site when I was prego and had my baby just recently in August and spina bifidia came up a couple of times and honestly I have herd great happy stories with children who have that condition. Don't think you did anything wrong if you are because these things happen and you and your family can be just as happy as if you were going to have a healthy baby. Just remember its the love that matters. I will be thinking about you.

When I was about 18 weeks pregnant, I was told that my baby had trisomy 18 and that she would be incompatible with life. I was advised by my long time physician that I should have an abortion to spare my husband and myself the heartache that was to come. After a lot of contemplation, I chose to go ahead and have my baby. I was told through amnio that she also had trisomy 21. I was devastated. But, I will tell you what, my baby was a fighter. She was implanted dangerously low in the uterus and until I was six months pregnant, I was on bed rest becasue of my increased risk of having a spontaneous miscarriage. So, by all counts, she shouldn't be here with us. But she is, after having an emergency c-section because of her congenital heart defects, I could not go through labor and could no longer carry her either. She was in the NICU for quite awhile, and she does have Trisomy 21, or Down's. But, and this is the important thing, she DID NOT have Trisomy 18. So, I have a disabled child, and sure it is hard at times, but I wouldn'tchange her for the world. She does things a little slower than most kids, but I never take anything for granted with her like other moms do. I also work in the human services field as a case manager. I have two little boys on my case load with Spina Bifida. They are both just wonderful. Both have health related problems, but both are in regular integrated classrooms, both are involved in their communities, both talk, both walk (Although they both have wheelchairs and walkers to assist them). Don't get disheartened. God chooses moms for disabled children for a reason. And you are one of the lucky few that will be blessed with this gift. It will be hard, there will be many tears shed, but keep you head high. If you ever need anything, you can contact me. My email address is ____@____.com luck, and my thoughts and prayers are with you and your family.

M.

SOORY TO HEAR THAT IT MUST BE DIFFICULT TO HAVE TO GO THROUGH THIS BUT I WANT TO GIVE U AN ADVICE DO ALL THAT U CAN FOR THAT LITTLE GIRL AND IF U HAVE TO GO TO A SPECIALIST OR ANY OTHER DOCTOR IN ORDER TO HELP UR LIL ONE DO IT CUZ IN THE END U WILL KNOW U DID ALL U CAN AND MAYBE EVEN HELP HER GET A CURE OR SURGERY TO MAKE IT ALL BETTER, HOPE TO HEAR FROM U TO SEE HOW EVERYTHINGS GOING WITH UR LIL GIRL...... J.-bpt ct

I'm very sorry to hear that!! I hope she comes out strong in this and that it gets tooken care of.
Prayers go out to you!!

H.,

I'm so sorry you are so scared. I can't imagine the fear. You will be okay, and she will be okay.

1. You need a medical team for her that you have 100% absolute trust in. No matter what anyone else tells you, who's the best, who's ranked what, all that matters is that you trust and respect the doctors who treat your daughter absolutely. Meet with the folks at Brigham, it really is anexceptional facility, get to know the staff, and ask all the questions that you have. If the docs or specialists don't answer, or get impatient, or use words you don't understand, THEY ARE NOT DOING THEIR JOB. Medical care is a service you pay someone to provide, no different than a plumber or an accountant, or the girl who does your nails. Expect the same level of customer service. You are paying for their time, you are in control of what does and doesn't happen, and you can fire them if you're not satisfied. They are just service providers, not gods in white coats. Don't let yourself be intimidated.

2. Read, read, read. We're more afraid of the unknown that of anything real. The more you learn about spina bifida, the more comfortable you'll be, and the more confident you'll feel that you CAN do this. You CAN take care of this little girl. You CAN learn to accommodate for her condition. You CAN give her a happy, wonderful life.

3. Get your support lined up. Family, friends, neighbors. This is my advice to any new mom. You're gonna need it. Find someone who can drive you to doc appts once Dad has to go back to work, since you're not supposed to drive for awhile after delivery.

4. Take a look around the internet for support groups of parents who raise a child with spina bifida. They are out there, and willing to help. You're not going this alone. Talk to other moms who've been there, who can help you out, or just know what you're feeling when the time comes to vent. It helps.

H., I wish you, your boyfriend, and your little girl the very best. My sister has a son with Moebius syndrome, and things were rough in the beginning for her. I asked one afternoon, "how are you making it through this?", and she said, "what's my other choice?" You will find the strength you need, because there isn't anything else to be done. My sister als gave me one more that I'll never forget. I asked her at one time, when the diagnosis was being questioned, and they wouldn't be able to tell her anything till he was much older, "What are you going to do now?" She said, "I'm going to love him. He's my son. What else am I supposed to do?"

So that's pretty much it. Just love your little girl. Everything else will work itself out.

Oh H....I'm so sorry. Remember that God only gives us what we can handle - so you and your boyfriend must be pretty strong and resilient. Lean on family and friends as much as possible. The baby will be a joy to you!!

Reading this just brought tears to my eyes. Prayers going up for your family. I have no advice for you because I've never encountered this situation. But I believe in the power of prayer. God Bless you.....and God Bless your baby girl.

I don't know anything about Spina Bifida but I wanted to let you know that we will pray for you and your baby.

N.

Are you in Connecticut? If so, just remember this name "Camp Hemlocks". I don't know much about spina bifida but I can tell you this: growing up, my best friend has cerebral palsy. Once a year we went to this summer camp that is all handicap accessible... everyone that is a handicapped child can go, and bring a "buddy". All the activities are designed for everyone to enjoy, and we had a BLAST there. I remember meeting other kids with spina bifida there, and we'd all get into the pool, or do archery... the time of our lives. Spina bifida doesn't mean life totally sux! It's gotta be rough, but your daughter with support can enjoy life as much as anyone else :) And don't forget about Camp Hemlocks, she'll LOVE IT! We always had a great time, everyone there did regardless of their handicap.

awwwwww sweet heart. I can't imagine the emotions you are going through right now. I will be praying for you and your daughter. stay positive.

I also was referred to Brigham and Womens to give birth to my daughter,who did not have spina bifida, but did have a severe heart defect. I just want to tell you how wonderful Boston is when it comes to their healthcare,their doctors, just everything about them. My daughter is 16 months old and although she will always need constant care and check ups with her cardiologist due to the severity of her defect she is doinf great at the moment. They expect her to do great for many more years as well. I'm sorry to hear that you are going through this but you are certainly going to the best hospital around to help you. I'm from Alton NH and I still travel to Boston for her heart check ups. And I will never switch if I can help it....Before Jaylyn was discharged they made sure I was "comfortable" with everything I needed to do. (I was there in the hospital with her for 2 months straight) They had everything set up for me for when I got home with her peditrician, home nursing, home medical supplies. Everything I needed pretty much, they set up. And then when I got home the nurses on the floor I was staying on were my support system for quite sometime. I don't know how many time I just called to talk to a few of the nurses. Weather it was to vent my stress, or stress my concerens, or just ask the questions I knew the answers to but needed reassurance. They were there. It's been over a year and when Jaylyn has her appointments down there I still go and visit. I know it sounds cliche' but good luck with you and you little bundle of joy. You will get through it. Although it will be hard, you will get through it. Boston is tip top A #1 in my eyes. Give me a holler if you need any support, my email is ____@____.com viruses please. I"m just here to help out if I can....

Hello, From what I see you live in NH. I live in VT, my daughter has spina bifida, she 5 years old. Thing can and will get scary and upsetting. But she will be fine, I'm sure! I won't lie to you. There will be a lot of question you will have and a lot of info thrown at you all at once. My first suggestion is get a note book! Write down all of what the doctors say and any questions you have for them. When you set to the doctors you'll have you list of questions and you won't forget anything. The second thing is do you know why they are sending you to Boston? DHMC, Dartmouth in Lebanon has a great team! We have been going the since before our daughter was born. Kathy Doton is the spina bifida nurse and she can get you any and all the info you need and or want. A lot of baby with spina bifida have hydrocephalus(extra water on the brain) So they need a shunt(a long straw) to get that water out. And Dr. Duhaime at DHMC is the BEST. She the NeruoSurgen there. She's great. The last I heard she was one of the top 10 Pedi NeruoSurgen in the USA! I just can't say enough about her she's great. I wouldn't trust anyone else on my daughter.
There is a lot more that I could tell you but it would be a very long letter. So feel free to e-mail me at ____@____.com, Also if you would like to talk over the phone that is fine with me. Just let me know! I will help all I can.
D.

Hi H.,
I just wanted to let you know I will keep you all in my prayers. My son will be six next month and has some mysterious symptoms and significant health issues. We have been going to Boston for almost a year. Without them, we would have made no progress. The staff are wonderful. I hope you encounter the same positiveness. Life can be a challenge, but remember it is for a reason. When you see her beautiful face looking up at you, and feel the love of being a mom, you will find enormous strength and reserve that will take you through any trials you have to go to... God bless and if you need to chat, just email me at ____@____.com
Smiles,
Jenn

Hi H.,
Just wanted to tell you that you'll be in my prayers.
God Bless You.