The Circle of Moms site will be discontinued on March 1st, 2020. Head to POPSUGAR Family's Facebook page for more community discussions.

Let's Go >>

hemivertebra/scoliosis

Tracie - posted on 10/25/2009 ( 20 moms have responded )

17

17

0

I am interested in hearing from other mums who have had kids born with the congenital condition Hemivertebra which affects the spine. My son was diagnosed with it at three weeks old. The Hemivertebra has also caused scoliosis of his spine and he is also missing a few ribs. I would like to hear from other mums who have kids with this problem and who would like to share their thoughts and stories about it.

MOST HELPFUL POSTS

Apryl - posted on 09/02/2012

2

7

0

Hi I am 19weeks with a boy who has been diagnosed with hemivertabre of the t12-l1. No one is answering any questions I have. It's really getting me down. Can you help? Please? X

Tracie - posted on 09/02/2012

17

17

0

Hi Michelle, not sure where your friends baby's hemivertebras are in its spine or how many it has. Just know that it can be treated and more than likely fixed. My son is under the care of a world class surgeon in Melbournes Royal Childrens Hospital. He has liased with specialists in France and America and is due to be operated on in the coming weeks. My son is able to walk, run and climb and it has not held him back. Please feel free (or your friend) to add me on facebook and i can share my story with you or her. I know what your friend must be going through, but just reassure her that it will be ok!!! xo

Christine - posted on 02/11/2017

4

0

0

Hi Tracie, sorry for the late response. I haven't beeN on in a while. We had all the genetic testing done. Nothing. This is completelying random. She was born in September. Has hemivertebra in thoracic region. Curve was at 28 at last xray 6 months ago. She's up for new x-rays next month. It's been progressino though. She has two fused ribs, a quadricuspid aortic valve and a pelvic kidney. She has had surgery for a tethered spinal cord. I'm worried for many reasons obviously. Just want to do what's best for her. Want her to be happy and healthy. Still feeling so unsure of everything

Melanie - posted on 09/03/2012

1

0

0

hi im a mum of a 22 month old boy who was diagnosed at 3 months of having a curve .By the time we got to see a orthapeadic surgeon the curve was 40 degrees.We were told to carry on as normal and to come backin 6 months.I wish i knew then what i know now.It was only when my child was admitted to hospital in H D U and needed cpap ventilation more than once we seen our surgeon again were we got given a removable brace.We have had M R I scan which showed my son had hemivertebra but we did not get told this was the cause of scoliosis.Since this my son as been admitted to hospital nearly every wk.We have all kinds of tests done through genetics all came back normal but our neurology specialist says he must have a disorder and that we may nver find out what it is Denny is very delayed maybe due to all the hospital admissions as a few birth defects but is a child who is always smiling, is progressing ,he is now in his second plaster jacket and his curve has reduced from 80 degrees to 60 degrees in cast.His head lag was very poor but is improving greatly.We have physio and a global team to help is development.Denny can not walk but is very active and does want to go,which i should be very happy considering his health and condition.I am a worried mum who knows this will take time to correct i dont know what will be with his overall outcome .I have just read that if your child is poorly alot then it is a sign that his nerves are are not helping other organs and to seek advice from a chiropractor.I somtimes feel were all alone and not getting the right advice.I am going to seek out our nearest chiropractor and see if they too say this is what can happen.

20 Comments

View replies by

Ksenjorita - posted on 04/23/2018

2

0

0

Hello I am from Slovenia. Is there a mam who had a child with hemivertebra? The doctor said that he must be operated. My son is 2 years old. How the first operation in your case look like? Where do you do the operation? Is anyone there from Europe? Thank you

Mark - posted on 10/26/2017

2

0

0

I just wanted to post some feedback here. We similarly learnt our daughter had hemivertebrae at 20weeks and we were devestated. Our doctor laid it all on the table and gave us different scenario's in that it could be a marker for other more serious genetic conditions such as VACTERL. It was just before christmas 2015 and we were shell shocked. We were referred to genetecists and orthopedic surgeons, as well as taking the amniotic fluid test which fortunately came out negative - that finally gave us some relief that it wasn't anything more serious, but the hemivertebrae remained. I began to google research like heck and began to get comfortable when I begin learning people like Usain Bolt, Sarah Michelle Geller and Elizabeth Taylor all had the same. Then our baby was born. I was never so happy in my life. She was perfect and what's more there was no detectable curvature in the spine with the eye. The orthopedic surgeon told us the time in the womb is the most critical as their development is so rapid that there is an increased risk of the spine curving. It hadn't. She was perfect. We also learnt that with modern technology we are now picking up these conditions that 10years ago we would never have detected and never known. A baby would have been born and no one would have known. our daughter has 3 vertebrae fused together and without xray you wouldn't have a clue. She is happy and beautiful. We get an xray and see the orthepoedic surgeon once a year now to check progress. Maybe in the future some intervention is required but right now nothing. I wanted to write this to anyone else who may be searching google who may be in a similar situation that it's not always bad news. I wish you all the best.

Mark - posted on 10/26/2017

2

0

0

I just wanted to post some feedback here. We similarly learnt our daughter had hemivertebrae at 20weeks and we were devestated. Our doctor laid it all on the table and gave us different scenario's in that it could be a marker for other more serious genetic conditions such as VACTERL. It was just before christmas 2015 and we were shell shocked. We were referred to genetecists and orthopedic surgeons, as well as taking the amniotic fluid test which fortunately came out negative - that finally gave us some relief that it wasn't anything more serious, but the hemivertebrae remained. I began to google research like heck and began to get comfortable when I begin learning people like Usain Bolt, Sarah Michelle Geller and Elizabeth Taylor all had the same. Then our baby was born. I was never so happy in my life. She was perfect and what's more there was no detectable curvature in the spine with the eye. The orthopedic surgeon told us the time in the womb is the most critical as their development is so rapid that there is an increased risk of the spine curving. It hadn't. She was perfect. We also learnt that with modern technology we are now picking up these conditions that 10years ago we would never have detected and never known. A baby would have been born and no one would have known. our daughter has 3 vertebrae fused together and without xray you wouldn't have a clue. She is happy and beautiful. We get an xray and see the orthepoedic surgeon once a year now to check progress. Maybe in the future some intervention is required but right now nothing. I wanted to write this to anyone else who may be searching google who may be in a similar situation that it's not always bad news. I wish you all the best.

Christine - posted on 04/20/2017

2

0

0

Do you have an email? I have a picture of the ultrasound. I have no idea of how to explain it. I've tried to look up hemivertabrae but I'm seeing abnormalities in the middle of the spine when I do research and in my baby it's the lower part. I just don't know what this effects on the baby... her walking. Is there surgery for the condition? I have so many questions for the doctors and trying to figure out as much as I can ..

Christine - posted on 04/20/2017

2

0

0

Can someone please give me some info ? I'm 21 weeks and found out my baby has a hemivertabrae I have some questions and pictures but not sure how to post them on here! I don't see a specialist until next week. The lower spine has two bones it looks like protruding out

Tracie - posted on 11/29/2016

17

17

0

Hi Sammy, my son has 3 Hemivertebrae at T7, 9 & 11. He is able to walk , run & behave like any other boy. His spinal deformity is a result of a genetic deletion on a chromosome. I know someone in the UK who's son had a Hemivertebrae in the L region & he is fine. He has some surgery & wore a brace for a while & is doing well. My son had fusion survey a few years ago & it stopped his spine from continuing to curve. Are the drs concerned about the hemivertebrae with your sisters baby?

Christine - posted on 08/08/2016

4

0

0

Hi Tracie, yes we did. She had genetic testing done to see if there were any conditions causing the abnormal vertebra but there are not. Doctors feel it was random, no genetic cause.

Tracie - posted on 08/06/2016

17

17

0

Hi Christine, sorry to hear about your little girl. Just wondering if you have had her tested for a micro deletion on one of her chromosomes. My son's Hemivertebrae is the result from a micro deletion on chromosome 16p11.2 . He has other issues which all tie in with the deletion as well..

Christine - posted on 08/06/2016

4

0

0

Hi all,
At my 20 week anatomy ultrasound it was discovered that my baby had some abnormal vertebra. I went through hell and back for the next 20 weeks, trying to find out as much as I possibly could, trying to make as many connections as I could with all the specialists this little girl was going to need to see once she arrived. She is now 10 months old and we take things day by day. She has several affected vertebra- some hemi, some butterfly. She has two fused ribs, a displaced, albeit fully functional kidney, and a quadricuspid aortic valve. She has regular xrays to see how the curve of her spine is progressing (at last check which was 4 months ago, we were at 21 degrees) and regular echocardiograms. She will be having an MRI done at 1 year as well. We travel where ever we need to to see the best doctors. Everyone has something different to say though most feel very positive at this point. It kills me that she has to deal with all this. I wish I could just take it all away. Has anyone had experience with casting? I am wondering how it is going since that is likely going to be the next step for her.

Tracie - posted on 01/31/2016

17

17

0

Hello all, update on my son. He is almost 7 years old now. He was diagnosed with a genetic deletion on chromosome 16p11.2, which is responsible for the Hemivertebrae.. He was also diagnosed with autism spectrum disorder which also is in conjunction with the deletion. I can say he is doing exceptional. He has had spinal fusion surgery which involved removing 2 of the hemis, crushing them up & fusing them into the spine to help stop his spine from curving. He is due to have a rod put in at some stage but has been delayed as his surgeon passed away suddenly last year... Otherwise, nothing has held him back. He is able to do everything a normal child can do...

Skodackova - posted on 10/09/2015

2

0

0

Hi Tracie, I see you are very pozitive :) And hi other girls. I am in 21 weeks and my little boy was diagnosed hemivertebrae on 4. and 11 thoracal vertebras. Now we are in shock, and we don´t know what does it mean for him. Nobody know more about his condition and how will be his spine after born. I already read about hemivertebrae and it can be sign of many syndromes, but we hope, he will have just this ortopedic problem. And hope it doesn´t will be horrible. There are many degrees of this condition, so I pray it will be lighter one. I am desperate now. I would like to know something abou you, your babys. What you should doing with them to be "health". And how they are today?? Thank you

Apryl - posted on 09/09/2012

2

7

0

wow, thank you so much. :) i shall befriend you if thats ok, my name is Sarah jay smith on fb. X

Tracie - posted on 09/02/2012

17

17

0

Hi Apryl, My little boy has hemivertebras on his T7, 9 & 11 vertebras and also abnormal lumber vertebras. He was diagnosed at 3 weeks of age as it was not detected when i had my ultrasounds whilst pregnant. It has given him severe scoliosis but he functions like a normal little boy. He crawled and walked at the correct time and he climbs on everything and runs everywhere now. He is 3 1/2 years old now and awaiting surgery which is due in a few weeks. He is having one of the abnormal vertebras removed and then a second surgery will be done to insert a phenix rod in his spine. This rod works on magnetics and we adjust it ourselves. He is a happy and very content little boy. He has a deletion on chromosome 16 which is more than likely responsible for his spinal issues. (a deletion is where the chromosome is missing a small amount of information).

I understand how you feel about no one having any answers for you. For so long i didn't have any answers either. If you want you can add me on facebook and i can share my story with you. Good luck with everything. It is a condition that can be managed and more than likely fixed.

Michelle Barnett - posted on 09/02/2012

1

0

1

My friends unborn baby has just been diagnosed with this and she is looking for family's who have experience of the same issue. X

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms