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Lizz - posted on 01/15/2010 ( 19 moms have responded )

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Hello, my name is Lizz, I have a 4 month old son that was born with spina bifida and hydrocephelus, I have 3 other girls so he is the first son! We found out at 20 weeks the week before mothers day! THe drs said he would not be viable and that I had to go to another hospital that specilizes in this care and can do termination b/c he didnt do that, I was absolutly against this! Thank god because my son is an abslolute joy, and we are all head over heels in love with him! he had his first surgery right away to fix the spinal cord(L3) and a week later for his VP shunt. He has feeling all the to his ankles so he actually has a mild case! and they said he wouldnt live!, When we went to the childrens hospital they were very positive about pregnancy and that the baby would be fine! I would love to chat with other mothers for info or just for support! I am a stay at home mom!

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User - posted on 05/01/2010

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He will be your greatest joy and teacher! My daughter with spina bifida is ten years old! She is wonderful....brighter and with more personality than we know what to do with!

Kylie - posted on 02/13/2010

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Hi Lizz,
My name is Kylie and my daughter Mercedes is 6 months old now and she was born with spina bifida and hydrocephelus as well. I am a stay at home mom also and I would love to chat for info and support. I can remember when my husband and I first found out about Mercedes and told our family members the first thing out of my father's mouth was did they say anything about terminating the pregnancy. I was completely devastated because that was my dad and he should have supported my decision of keeping my daughter and helping me through that difficult moment. I would not trade Mercedes for the world she is the light of my life as is my daughter Dakota. Mercedes has opened my eyes to a whole different outlook on life. So please feel free to look me up anytime you want to chat or need support.

Jenifer - posted on 02/01/2010

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My daughter is an L5 and can feel down to her ankles. She is almost 13 years old. I would love to chat with you anytime. We have been through quite alot with her!

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Sondra - posted on 10/15/2012

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hey my name is sondra i just had twins one girl one boy and they are 10 months now. and both of them have been diagnosed with hdrocephalus. i am very scared and if any of u have any tips for me and the babydaddy i would really appercaite that thank u all

Tammy - posted on 10/09/2012

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Hey my sweet little guy just turned 8 months. He is the love of my life!! I found out at 20 weeks he would have sb and may need a shunt. He was born at 37 1/2 weeks had the repair at the L5 and did need the shunt. He also has chiari 2 but is mild!! Thank god...At only two months after his shunt placement he had to have a revision but its doing its job now. He has all his movement just a little slower movement. Which will improve... he has had the decompression surgery and it did great!! To have been through all he has he is such a happy baby he is starting to talk he can say mama.. dada.. and loves to shake his head to no no!!! For the mom with the bum problems stomahesive powder and eucerin aquaphor is the best for a bottom. They used ilex in the hospital which is $200 a tube and could not compare to this both are cheap and he has never been the least bit chapped r raw with them!! Good luck.. Well my little guy just said mama but i will be back i would love to talk more with moms going through the same thing. Sometimes you do feel alone!! Good luck to all these sweet babies!!!

Kristy - posted on 09/19/2012

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Hi!

I have a little guy that has Spina Bifida (L4) & Hydrocephalus. He is a month old now & doing great. We knew he had the hydro but did not know about the SB until delivery. He had surgery to repair the Myelo the day after he was born. So far he has not had a shunt put in but they are watching him very closely. He has feeling all the way to his feet but he doesn't move his feet or toes much. We have been lucky & only have to cath him once a day. This is all VERY new to us and we feel overwhelmed at times but we love him so much and he brings such joy to our lives that we feel truly blessed to have him!

I would also like to chat for info or support

Kathy - posted on 05/23/2012

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Hello to everyone! I posted earlier when my son was only 8 wks. He actually was suffering from undiagnosed hernias. He had surgery in Jan. and has been perfect ever since. He is almost 7 months old now and smiles non stop. No shunt revisions and as of now no cathing yet. He is in his last set of casts for his club feet and he is getting casted for afos this fri. We are all so in love with him. He is my first biological child with special needs. We have a 12 yr old that we adopted when he was three. He was born with a muscle and joint disorder, club feet and his right hip dislocated. He is in a power chair and cognitivly he is fine. He doesn't miss the use of his legs because he never had it. He goes to school, has girlfriends and is a happy kid. It helps me to see that my son can live a happy life when he gets older. We are in Colorado and we tried out Denver Childrens Hosp but it just wasn't what we were looking for. We have since been to the Rocky Mountain Childrens Hosp and are overjoyed at the individual attention and friendliness that has been shown. They also have a spinal defects clinic there and the doctors are wonderful! Good luck to all and hug your kids! They are so precious.

Nikki - posted on 05/22/2012

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Hi Lizz!
Congrats!!! I actually cried reading you post - My twins are 4 months old - one boy one girl. I found out at 18 weeks my little guy (or Baby A, back then) would be born with Spina bifida. It was the worst day of my life - and I promised myself and this baby - that would be the ONLY day would feel sorry for either one of us.
I can happily say I am way in over my head with three kids under 3 and I love (mostly) every minute of it! My little guy moves his legs -although has never independently moved his feet or toes. HIs biggest hurdle right now is the non stop diaper rash - his poor bum is raw form constantly pooping - do you have the same problem?
I would love to keep in contact with you as I know no one else dealing with SB and I could use all the help and resources I can get!
Congrats to us both on our perfect little miracles! God only gives the most special babies to the most special parents!
:)

Lizz - posted on 05/14/2012

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I have found wonderful support groups on facebook, they are called Living with Spina Bifida and United by Spina Bifida, they are AMAZING please find them and join! They are private, so feel free to talk or ask about anything!!!!!!!!!!

Sara - posted on 05/02/2012

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I am expecting my first baby isabella! We were told at 19 weeks she had hydrocphelus and then we were sent to a specialist where the found SB. I always dreamed of a little girl dancing and cheer leading! So these news crushed me I am starting to except it and be happy. It's on the lower part of her back and they did not see a sack at 20 weeks they told me the lower it is the best outcome. I am hoping she can walk and have normal bladder control. She does have a club foot but only one look club but they said that will be easily fixed. I really could use someone to talk to!

Stephanie - posted on 03/21/2012

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My daughter is 20 months old in the same situation and her doctors have been wonderful. She is catheterized every 3 hours and has to take ditropan to keep the pressure in her bladder down, she has a VP shunt and she wears AFOs (shoe inserts) to help her walk. She was diagnosed with L3 as well. She can wiggle her toes a bit and mover her feet, she just has weak muscles. Appointments are constant within the first year but they have begun to slow down a bit. My daughter walks, talks, plays and learns like a normal 20 month old should. We just keep facing our challenges and so far we are succeeding. Good luck with your son!

Kathy - posted on 12/25/2011

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Hi! I have an 8week old with SB and a VP shunt. He is always fussing when he feeds and has stooling issues. Small amounts with every diaper change. GI dr wants us to irrigate his bowels. Anyone else been through any of this?

Jo - posted on 10/26/2010

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hi lizz am jo clarke age 25
i got a 7mth old lil girl that was born with spina bifida and hydrocephelus i have 3 other boy so she was my first girl i found out at my 20 week scan they ask me to have a termination i could not do that and so glad i didnt she a bubble of joy she had her first surgery when she was born than aweek later had her vp shunt in she has no feelin from her hips down but i never give up hope what i say to people is she no diffrent from me and u she just needs that lil bit of help well if u ever need to chat to add me on fb am always there to listen hope to here from u soon am a stay at home mum x

Tysa - posted on 08/05/2010

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Hey there. I have a brand new baby boy who was born on June 30th with spina bifida who was also shunted at a week old. He has some movement in his hips and knees but no feeling in his ankles & feet. Its nice to have other mothers who are going through some of the same things. Add me on FB if you would like to chit chat sometime. Tysa Alvis in Florida

Ashley - posted on 07/23/2010

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Im in the same shoes you are in. My name is Ashley and I gave birth to my first son July 5th and he was born wih spinia bifida and the drs also told me that is was a severe case and termination was the best choice and i said NO!!!!!! He has had his backed repaired and a shunt put in. He was also born with bilateral club feet which we are working on his second set of cast to try to repair them as are as if he has feeling in his feet I know he has a little but not sure how much. We are going to the dr about that next week.

Danielle - posted on 05/12/2010

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hi, nice to meet you. you just described my son. lol except Ian is 20 months old now and I dont have any girls (yet)I have an older son who is 3 and I am a stay at home mom aswell.

Ashley - posted on 04/29/2010

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Hi Lizz,
I have an 11 month old boy born with spina bifida, hydrocephelus, and microcephaly. He is also at L3 level. He has feeling all the way down his right leg and to his knee on his left. When I was pregnant and going to see a specialist she was telling me all sorts of things that would possibly be wrong, none of which associated with spina bifida. So when he was born with myleomeningecele he was flown by helicopter to a hospital in our state capitol. He had his back and shunt surgery first thing that following morning. He has a physical therapist and an occupational therapist that work with him at home courtesy of First Steps. If your not already involved with them I would strongly reccomend it. We were told that my son had no feeling in his legs, when we left the hospital, and that he would never walk. He isnt walking yet but has come a tremendous way so far. Id love to keep in contact with you.

Stephanie - posted on 04/20/2010

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Hi Lizz,
My name is Stephanie and my daughter to be is Molly. I'm currently 6 months pregnant and I foud out in February that my baby was going to have spina bifida and hydrocephalus. My OBGYN was very concerned about me being too young to handle this and wanted to me to consider terminating the pregnancy. My boyfriend wouldn't hear of it, we were both very hopeful that we could make it work. After two level 3 Ultrasounds and an Amnio the doctors confermed the Spina Bifida and sent us to a Maternal and Fetal Medicine Specialist. We've had problems finding an opening or sac in the babies back so I was sent for an MRI. In a few weeks we get to discuss the results and talk with the neurosergeon who is going to fix the spinal cord when she is born. We will also figure a date for a C-section. I'm really nervous because this is my first baby but after reading all the comments you have received and the support from my friends and family I am just hopeful that everything will turn out okay.

Amanda - posted on 02/01/2010

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Hi Lizz,

My son Nickolas was born with spina bifida (S1) and hydrocephalus (vp shunt) in November. I also have a 22 month old daughter. I found out at 22 weeks and was given a choice to terminate. My OB was very supportive (I am a L&D nurse and so he was a co-worker as well) but he sent me to a specialist who told me to reconsider terminatinmg, that I was looking at a lifelong disability and he would be a paraplegic). After changing specialists I found my doctors very supportive. The children's hospital had the most supportive - my motto is that you need to look at where the doctors are coming from. OBs are in charge of the pregnancy and they view this as something wrong with the pregnancy. The children's hospital, neurologists ect are in charge of the baby and they are the ones to give you the support you need.

My Nickolas is such a joy and I wouldn't trade him for anything!

Have you checked out www.spinabifidaconnection.com this is a support forum for parents, children and adults with spina bifida. I find it very supportive and helpful.

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