Hi everyone, i've been searching for someone else that has a baby/child with cerebral palsy. Our twins had twin to twin transfusion syndrome (TTTS) when i was 19wks preg (i already have a thread with all that info in the twins discussion) and our eldest twin which was the donor has cerebral palsy. I would love to talk to others in the same or similar situation. What indicates CP? So far she has been doing what she should but i am noticing her lacking in certain areas. I try not to compare her to her sister but it's hard not to when i'm always being asked by professionals if they are doing the same things. I don't know if she's just slow or if it is CP and she's more unsettled...screams the house down majority of the time when she's put down!
Any advice would be a great help!!
I don't have any experience of this but I just wanted to , I couldn't read and not post. Have the hospital told you the extent of her CP or is it still being determined?
Thanks We've been seeing a paed and he said that really we wont know til she's 18mths the extent of the CP. When i was 20wks preg i had an MRI to see if either suffered brain damage from the TTTS and it showed her brain had shrivelled and we were told she had severe brain damage and should terminate...she had another one when she was 2wks old and it still showed damage but they can say how bad til she's older. I just hate the not knowing!
I remember when you were pregnant and the recommendation for you to terminate. Hopefully the damage will not be too bad, but it must be a horrible time waiting for answers.
the best decision we ever made not to terminate, the girls are just gorgeous! Love them so much and no matter what the outcome that wont change. Thanks i do remember you following the journey
She is smiling, making sounds, rolling (when she doesnt complain about being on the ground), holds her head up and is extremely cuddly. We see the specialist in melb in may..
My niece aquired brain injury at birth and was on life support for a week. We were given predictions that she was never going to be able to walk or talk and would have severe intellectual disabilities, based on the MRI results. We said our goodbyes, and her life support was turned off. Baby had different plans, and started breathing on her own. She survived the night, and the next and then began feeding.
4 years later, she attends kinder, is walking, never stops talking, and is a gorgeous bright little girl. SHe still has CP, and this is expressed in her walking and talking, but she has far surpassed any of the early predictions.
She has had a lot of early intervention that has definitely helped, and her strong will is definitely on her side.
We don't know what her final abilities will be, but i can say the same about my child who didn't have the same rough start.
A baby's brain is an absolute miracle. Injuries that would devestate an adult, a baby can cope with remarkably well because their brain's are still 'plastic'. Which part of the brain does what hasn't been set down completely so other parts can take over from the damaged parts quite well. It is fantastic to see and I'm so happy for you that she is doing so well.
Just a quick update- well our twin with the cerebral palsy (later diagnosed as PMG- polymicrogyria) passed away on the 4th august at 9 1/2mths in her sleep. They are putting it down as SIDS. We are devestated.
Reply With Quote, I couldn't read and not post. Have the hospital told you the extent of her CP or is it still being determined?
Registered User
Twin with Cerebral Palsy from TTTS??
We've been seeing a paed and he said that really we wont know til she's 18mths the extent of the CP. When i was 20wks preg i had an MRI to see if either suffered brain damage from the TTTS and it showed her brain had shrivelled and we were told she had severe brain damage and should terminate...she had another one when she was 2wks old and it still showed damage but they can say how bad til she's older. I just hate the not knowing!
i am so sorry you have lost your little girl. thinking of you and your family.
Bookmarks