When I was 19 weeks pregnant with my twins we found out they were boy/girl twins, we also found out our daughter had a spinal condition. With further checks at 26 weeks we were advised to terminate her and carry on her brother’s pregnancy only. This was a huge rollercoaster for us because not only did we get bad news about our daughter, my sister’s daughter was born 16 weeks before my twins with a syndrome.
They couldnt tell us what exactly was wrong, what life quality she would have but expected us to decide if we wanted to keep her or not. We decided against their advice and continued our pregnancy.

I was told I was unable to give birth naturally due to not knowing my daughter’s condition and also not wanting her spine to go through the birth canal. So we gave birth by csection at 35 weeks.
I didnt get to see or hold my twins for the first 5 hours. and when i eventually did nothing seemed wrong. The twins stayed in nicu for 3 weeks. but we never got a visit from our hospital team we had during my pregnancy. so we never got much info about what was wrong. Our daughter seemed fine and started to grow just as any other child would except she had a slight lean to her neck which was expected.
every 6 months she had a xray to keep an eye on her spine up until nov 2013 after that appointment we didnt hear back.
I was so busy in 2014 with the loss of my father and my own mastectomy surgery that it didnt dawn on me that our daughter hadnt had an appointment for a year. I called the hospital to get us an appointment asap.
our daughter has started kindy and is very happy and independent. The lean in her neck and her balance had gotten a little worse but nothing that really worried us.
Her appointment was booked and she had an xray, even though her spine hadnt changed too much the doctor suggested she wear a spinal and neck brace. She was casted and even got to pick a design, I was happy that something would help her and hoped for the best.

We picked up her brace last week on the monday, she couldnt use the toilet, bend at all, reach to pull up or down her pants, so i called the hospital and told them we were having problems and went back the tuesday, the doctor cut the brace a bit and said that is all we can do. we tried to use the toilet and again my daughter screamed in pain as the brace cut into her legs as she tried to wipe herself.

We came home and tried to stay positive. It was her first night she had to sleep in her brace so I stayed up listening out for her just incase she woke up, thankfully she didnt but i was exhausted after hardly sleeping. Wed came and she went to kindy, thankfully I was in for parent help so I could see how she went at school. She couldnt sit on her bum on the floor as her brace would dig into her legs, she couldnt use the toilet independently, she had to stand or sit on her knees, she couldnt get up off the floor if she got down and it was hard to watch.
That night it was bed time, after a bath i put her brace back on, she looked at me with such a sad face and started to cry, I dont want this on mummy and wrapped her arms around me and cried, my tears started, i didnt know what to say. I wanted to through the damn thing in the bin and be done with it. I managed to pull myself together and try explain that it will really help but left her room in tears. Up all night crying, wondering what to do.

I know it could have been alot worse, our situation isnt as bad as some others but this is hard for us and breaks my heart to watch her struggle. I hope she gets used to it sooner than later and it helps her like we hope

Posted anonymously, 11th May 2015

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  • Besides managing to contact other families whose child has the same condition I hope you got a second opinion.


  • I’m so sorry to hear you’re having such a hard time and that your daughter is in pain. I really hope you can find something that can help, so I agree with the commenter who said to look for forums for people that have the same condition as your daughter. That could really help. Hopefully, the brace will help correct your daughter’s condition, I would also contact a children’s charity in case they help you financially if you think you need any help with that.


  • My heart breaks for you. So hard to do things that help your child but cause discomfort.
    I’m concerned that the Dr said it’s all that can be done regarding the brace, that doesn’t sound right to me. Can you get another opinion at all.
    I hope things get better and the brace can be adjusted so your daughtr can be comfortable. Hugs xx


  • Oh my heart goes out to you and your little princess, I really can’t offer any advice but was thinking you could try and google to see if any other parents have any tips and advice that may assist and help you and her to adjust.
    Wishing you both well and I hope and pray that she soon gets used to them and her health improves immensely. All the best of wishes. xxx

    • That’s a great idea. Getting in touch with others going through a similar thing often helps.


  • I feel so much sympathy for you. This would be so hard.


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